Heroes Spring 2015

STORIES FROM THE STOLLERY CHILDRENS HOSPITAL FOUNDATION SPRING 2015
It Takes a
Community
STEPHIE GAGNON
GARNERS SUPPORT IN
FORT SASKATCHEWAN
HELPERS
WITH HEART
PAIN RELIEVER
Dr. Lawrence Richer
helps ease migraines
Cardiac outreach
team brings care to
communities
FAMILY
FOOTSTEPS
Social worker follows her
mothers lead in caregiving
PM 40012957
PLUS:
SEE THE STOLLERYS
REACH FOR PATIENTS
AND FAMILIES
THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP
Thank
you!
Proudly Supporting
With your support, the 2015 Stollery Family Day Classic raised
more than $350,000 a total of $1.4 million since 2011!
The four-day invitational, in support of the Stollery Childrens Hospital Foundation
and Hockey Edmonton, focuses on children, families, active living and good health.
Proceeds from this years tournament will support equipment used in the
Stollery Childrens Hospitals cardiology outreach clinics.
Thank you to Steve Serdachny and the

Stollery Family Day Classic organizing committee!
Special thank you to our volunteers, participants,
sponsors and donors!
Sponsors:
ATB Financial, Murrays Trucking, Go Auto, DAmores Mercato, Great Canadian,
Serdachny Powerskating & Hockey, MSI Metalworking Solutions, Oil City Web,
Dolce Vita Homes, Boston Pizza
For more information, visit: www.familydayclassic.com
contents SPRING 2015
Stollery Family
Departments
24 HEADACHE HELPER
BORDERLESS COMMUNITIES
A pediatric neurologist helps ease

the ache of migraines in children
26 A LOT TO SWALLOW
The Stollerys Audiology and
Speech Language Pathology
department helps children with
hearing and swallowing difficulties
28 LIFE BLOOD
Pediatric thrombosis and
hematology nurse practitioners
make the course of sick childrens
lives easier
37 LIKE MOTHER, LIKE DAUGHTER

A Stollery NICU social worker
comes by her interest in the
helping professions honestly
A message from the president and

CEO of the Stollery Childrens
Hospital Foundation
26
FOUNDATIONS OF LIFE
12 TECH FILES
Features
14 BEST IN THE WEST
The Stollery Childrens Hospital
serves one of the largest catchment
areas in the world
16 STEPHIES RIDE
A rare autoimmune disease is no
match for a philanthropic Alberta
pre-teen and her community
20 FROM THE HEART

The cardiology outreach program
takes its expertise to communities
across the province
30 STOLLERY SUCCESS STORY

A young womans hospital history
reflects on an adolescence that
almost never was
30
Home monitoring is now

possible to check for blood
pressure problems
23 WHY I DONATE
Monthly Stollery donors are moved
to give by stories of impressive care
and first-class treatment
32 MILESTONE
ATCOs employee-led fundraising
program is making a difference in
the community
34 CORPORATE HERO
Edmonton Valve and Fitting
has raised $500K for the Stollery
since 2000
36 VOLUNTEER HERO
The man behind Dr. PatchUp
finds laughter to be the best
medicine for kids
38 THE LAST WORD
16
ON THE COVER: Stephie Gagnon is in remission
and riding high.
PHOTO: Cooper + OHara
S TO L L E RY K I D S. C O M
36
S P R I N G 2 0 1 5 | HEROES
SPRING 2015 VOL 3 No. 2

STOLLERY CHILDRENS HOSPITAL FOUNDATION
ASSOCIATE EDITOR: ALEESHA JEX
PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE
Stollery Childrens Hospital Foundation
BOARD OF TRUSTEES:
CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers
VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP
LAURIE ANDERSON, CMA, WAM Developments
RICHARD BALAN, RTA Holdings Ltd.
JONATHAN CHIA, CA, Melcor Developments Ltd.
DR. ALF CONRADI, Stollery Childrens Hospital
LINDSAY DODD, MBA, Savvia Inc.
DOUGLAS GOSS, Q.C., AOE, Bryan & Company LLP
NOAH JONES, BA, CFP, CLU, Sorrell Financial
ROD MACKENZIE, P. Eng., Legato Resources Ltd.
DR. RAYMOND MUZYKA
LEIGH-ANNE PALTER, MBA, Conroy Ross Partners
GORDON PANAS, CA, PCL Constructors Inc.
STEPHEN PETASKY, LUXUS Group
RYAN POMEROY, Pomeroy Lodging LP
DR. WILLIAM J. SHARUN, ThirtyTwo Dental
ZAHRA SOMANI, MBA, Pirani Group
MICHEAL WEBB, MacLachlan and Mitchell Homes Inc.
EX OFFICIO:
DR. RICHARD FEDORAK, University of Alberta
DR. SUSAN GILMOUR, University of Alberta and Stollery Childrens Hospital
DR. CHRISTINE KYRIAKIDES, Stollery Childrens Hospital
TRACY MACDONALD, Stollery Childrens Hospital
DR. DAVID MADOR, Alberta Health Services
THANK YOU
to the University of Alberta
12 hour Dance Marathon
for putting your money where
the miracles are.
You helped raise more than
$11,000!
VENTURE PUBLISHING INC.

PUBLISHER: RUTH KELLY
DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS
EDITOR: SHELLEY WILLIAMSON
COPY CHIEF: KIM TANNAS
ART DIRECTOR: ANDREA DEBOER
GRAPHIC DESIGNER: BEN RUDE
PRODUCTION MANAGER: BETTY FENIAK SMITH
PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER
DISTRIBUTION: KAREN REILLY
CONTRIBUTING WRITERS: Matt Beauchamp, Lyndsie Bourgon,
Martin Dover, Jen Janzen, Robbie Jeffrey, Sue LeBreton, Jacqueline Louie,
Christy Nich, Cory Schachtel, Samus Smyth
CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS:
Buffy Goodman, Anthony Houle, Vinson Lim, Cooper + OHara,
Kelly Redinger, Riyaz Sharan, Viewpoint Photography, Stephen Wreakes,
Nicki Wohland, Romy Young Photography
ABOUT THE STOLLERY CHILDRENS HOSPITAL FOUNDATION
The Stollery Childrens Hospital Foundation is committed to funding
excellence at the Stollery Childrens Hospital. Excellence comes in many
forms: specialized equipment; sub-specialty education to train the brightest
medical minds; research to pave the way to the discovery of new treatments
and cures; and specialized pediatric programs that enhance family-centred
care, and patient and family outcomes at the Stollery. Content may not be reprinted
or reproduced without permission from the Stollery Childrens Hospital Foundation.
HEROES is published for the Stollery Childrens Hospital Foundation by

Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3
Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276
circulation@venturepublishing.ca
Printed in Canada by Burke Group of Companies Limited.
Heroes is printed on Forest Stewardship Council certified paper
Publications Agreement # 40012957
Return undeliverable Canadian Addresses to:
Stollery Childrens Hospital Foundation
1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8
All fundraising totals are listed as gross unless otherwise specified.
FOUNDATION message
Borderless Communities
PHOTO: ROMY YOUNG PHOTOGRAPHY
BY Mike House, MBA, CFRE

President & CEO, Stollery Childrens Hospital Foundation
SHEER DELIGHT: Stollery kids Lexie Prunkl and

Maddi Dewald joined Make-A-Wish Northern
Albertas CEO and executive director, Cathy
Gabucci, to shave Mike Houses hair off at this
years Hair Massacure.
WHEN I THINK OF COMMUNITY, I THINK OF

the things that matter most to me. For example, the many
people that positively impact and influence the world
around me, such as my friends, my neighbours, my kids
school teachers and my work colleagues. I think about
the importance of providing a healthy quality of life for
me and my family, and teaching my children the value in
giving back. I reflect on the things that give me a sense of
ownership and belonging, and take pride in knowing that
my contributions are making a meaningful difference to
those around me.
When we talk about community and the Stollery
Childrens Hospital Foundation, we are talking about
all these things and more. Thats because the reach
of the Stollery is felt across Western and Northern
Canada. And the impact of our donors and supporters
in outlying communities is felt everyday within the walls
of the hospital.
In this issue of Heroes, youll meet many wonderful
people who, despite living or working outside of Edmonton
or even Alberta, are making a lasting difference to the
quality of care that is synonymous with the Stollery.
For example, our cover child is an amazing girl from Fort Saskatchewan who, in just four
short years, collected close to $200,000 for the Foundation through a popular bike tour in
her honour. Six years ago, specialists at the Stollery diagnosed Stephie Gagnon with juvenile
dermatomyositis, a rare disease that attacks the bodys joints, muscles and organs, and can
prove fatal if undetected and untreated. But thanks to the quick action of the Stollery care
team, Stephie hasnt required medication for two years and returns to the Stollery as an
outpatient to ensure her recovery continues. Learn more about this impressive young girl on
page 16 (Stephies Ride).
Another Stollery kid is taking a page right out of Stephies fundraising handbook. Parker
Bergeson travels from Whitecourt several times a month to see specialists at the Stollery. This
fearless four-year-old has had more than 40 surgeries since birth, but rather than rest, Parker is
raising money for the Foundation; more than $1,600 (see page 8). Parkers mom, Robin, says
her son understands there are other kids who need help too. The capacity of kids giving to kids
never ceases to amaze and inspire me.
If you were to take a drive a few hours east of our city, you would meet a long-time
supporter of the Foundation who believes he has a responsibility to give back (For the Kids,
page 23). Bill Carter, a retired teacher from Clandonald, Alberta, says during his 32 years in
the classroom he taught many kids who had a brush with the Stollery. Now a grandfather and
monthly donor, Bill says he takes great pride in knowing his contributions are directly helping
to build new operating rooms at the Stollery to help future generations of kids in his town and
similar towns across Western Canada.
There are also many talented health care providers at the Stollery with rural roots.
Our One to Watch this issue is from St. Paul, Alberta. Dr. Lawrence Richer (Growing
Pains, page 24), was one of the first doctors in Canada to specialize in a growing, pervasive
problem for many children: headaches. Thanks to continued donor support and the
Foundations ongoing investment in research at the Stollery, Dr. Richers been able to study
the effects of hydration and other treatments on children suffering from serious migraines. Dr.
Richers research is leading to healthier minds in communities across Canada.
Then theres the Stollerys cardiology outreach team. Together since the mid-1980s, this
rotating team has grown from one pediatric cardiologist to nine, as well as two registered
nurses and an echo sonographer who specializes in heart ultrasound. The outreach team treats
up to 1,000 patients per year in such centres as Yellowknife, Red Deer and Fort McMurray.
Considering the Stollery treats the second-highest number of pediatric surgical cardiac cases
in Canada, the outreach team treats nearly 15 per cent of the pediatric cardiology programs
entire annual volume. Remarkable!
And to clearly show you how connected the Stollery and our Foundation are to communities
across Canada, weve included a two-page spread that indicates the distance our patients
and families travel to receive specialized care (see page 14). From Fort Smith, Northwest
Territories to Fort St. John, B.C. From Lloydminster, Saskatchewan to Rapid City, Manitoba.
From Whitecourt, Alberta to White Rock, B.C. Our families and supporters are as diverse as
the geographic regions from which they hail. The one thing they all share is a deep connection
to the fantastic folks who put them first whenever they visit the Stollery Childrens Hospital.
The word community may mean different things to different people. However, by
working together, its clear that we can make a world of difference by making a difference
in the world.
I hope you enjoy this issue of Heroes and have a happy, healthy spring and summer.
foundations OF LIFE
PHOTO: COURTESY MELINDA ELGOT
PHOTO: COURTESY MELINDA ELGOT
A Heart as Big as Everest
NAOMIS
FAMILY AND
FRIENDS RAISED
$13,984.20
PHOTO: NICKI WOHLAND
FOR CAMP
EVEREST!
NAOMI ELGOT LOVED CAMP EVEREST. THE CAMP,

hosted by the Stollerys Neurosurgery Kids Fund, is designed
for children with neurosurgical conditions. Naomi had brain
cancer, and found kindred spirits at the camp. When she
first showed up, she was very nervous, and I got a couple
of phone calls that first night from a very sad girl, says
Naomis mom, Melinda. But there were some incredible
staff members there who encouraged her to stay, and they
kept sending me pictures of her enjoying herself. By the time
it was finished, shed made some very close friends, and it
was a camp that was very near and dear to her heart.
Naomi registered for the following years camp. Tragically,
she passed away the day after Camp Everest began. Her
friends and family looked for some way to honour her memory,
and remembered how much she enjoyed Hair Massacure,
an annual head shave to raise money for children with lifethreatening illnesses, supporting the Stollery Childrens
Hospital Foundation and Make-A-Wish Northern Alberta.
6
HEROES | S P R I N G 2 0 1 5
So in 2014, John Paul I Catholic School kicked off its annual

head shave in Naomis memory combining her two favourite
fundraising events. They raised more than $12,000, and this
year, on February 12, they raised a tremendous $13,984.20
for Camp Everest.
Naomi was a very compassionate child, constantly emptying her piggybank to donate to people, Melinda says. And
we just think its incredible that her legacy of compassion is
continuing through these kids.
Jodi Bruschetto, who helped organize the fundraising
efforts, says that Naomi only had good things to say about
Camp Everest, and the kids at her school were happy to help
raise money for it. The kids love the fundraising, and last year
they were coming up with ideas on their own, like making and
selling bracelets and scarves, Jodi says.
She was the most special, strongest little girl Ive ever
known, Jodi adds. She touched the hearts of people that
didnt even know her. We miss her lots.
S TO L L E RY C H I L D R E N S H O S P I TA L F O U N DAT I O N
PHOTO: COURTESY DIANNE ROBINSON
Compassion
on Ice
THREE YEARS AGO A YOUNG BOY NAMED COLE, WHO
played minor hockey in Sherwood Park and attended his fair share of
local hockey games, developed terminal brain cancer. He didnt make it
through the Christmas season. Touched by his story, Leighton Larson,
the head coach of the Sherwood Park Bulldawgs, decided to start a
fundraiser for the Stollery Childrens Hospital Foundation in his honour.
I thought just my team would do this little fundraiser, he says with
a chuckle. Instantly another team jumped in, and by the end of the
week, we had eight teams involved.
What began in honour of Cole has now become a full-fledged
community effort called Goals with a Goal, as atom-division teams from
Sherwood Park and Edmonton organize a nine-day stretch of games in
February. For every goal scored during these games, spectators make
a donation to a goal can, or pledge their names on a donation sheet.
In its third year, Goals with a Goal has collected more than $12,000 for
the Stollery Childrens Hospital Foundation.
The fundraiser continues its tradition of honouring kids who have
used the Stollery. The second years instalment was held for Peyton,
who had a brain tumour removed, and this year it was held in honour of
Tristan, who Leighton has coached twice and who may require a kidney
transplant. Tristan has been reliant on the Stollery since birth, says
Leighton. The Stollery is part of his life, and hes a
hardworking, great kid with determination. Its
very easy to find inspiration in these kids.
MORE THAN
Leighton has high hopes for Goals with a
Goal, and while the last three years have
surpassed his expectations, he hopes it
keeps
growing. At the end of the day, our
CONTRIBUTED
youth are our future, he says. I look at the
Stollery as an investment in that future.
$12,000
Change for
CHANGE
LOUIS WAS BORN WITH OSTEOGENESIS IMPERFECTA
(or brittle bone disease), a chronic disorder that left his bones
susceptible to fractures. By the time he was three months old, Louis
had suffered more than 70 broken bones. He has stayed at the
Stollery countless times, says his mother, Dianne Robinson, including
one 54-day stay. But through it all, Louis who just turned eight
years old maintained his personality and optimism. His friends
at Thorncliffe School know how much he depends on the Stollery
Childrens Hospital, so they decided to give back to it with a
fundraiser in Louis name.
Kim Wilson, Louis Grade 2 teacher at Thorncliffe, says the idea
came from a program that the school had in place that encourages
community service. We thought, why should we do something else
when we have someone in our school that represents a charity that
needs support? We thought it would make it more meaningful for the
kids. And thus, Loonies for Louis was born.
Taking a page from their Terry Fox fundraiser, the Grade 3 class
challenged the school to do chores at home to
receive payment of a loonie, and then pool that
money into a fund that would go toward the
Stollery Childrens Hospital Foundation. They
raised an admirable $738, and are hoping to
LOONIES
do it again next year. To Kim, its a sign of
FOR THE
the schools widespread support for Louis,
STOLLERY!
she says. A lot of our kids have been to the
Stollery, and they all know about Louis, she
says. Hes got a lot of character and a tenacious
attitude.
Dianne says Louis feels great about what his class is doing in his
name, and says, The kids at that school are simply amazing they
protect Louis and make sure hes OK, adding the fundraiser does more
than that. It helps our kids learn more about helping other people,
and there are so many things out there that kids go to the Stollery for,
she says. So, kudos to these kids for thinking about other people!
PHOTO: COURTESY LEIGHTON LARSON
738
foundations OF LIFE
Parker Bergeson: Fundraising Champion

FOUR-YEAR-OLD PARKER BERGESON AND HIS MOTHER
PHOTO: STEPHEN WREAKES
Robin are local celebrities on the annual Corus Radiothon fundraiser

for the Stollery Childrens Hospital Foundation. Since he was
born, Parker has had 72 yes, 72 hospital stays at the Stollery
and more than 40 surgeries and procedures. And still, every few
months he requires surgery to dilate his esophagus so he can eat
without choking. Every year, we tell people about Parkers story
and how people donating to the Stollery can provide proper medical
equipment and help parents be more comfortable when theyre at
the hospital for weeks on end, Robin says. If it wasnt for the
Stollery, Parker probably wouldnt be here.
But lately, Parker has done some fundraising himself. In addition
to the $1,500 raised under his name as part of Corus Radiothon,
he raised another $100 by asking people to give donations to the
Stollery in lieu of presents for his fourth birthday. Hes got lots of
toys, and he understands that there are kids with other needs,
Robin says. And the Stollery is so important because thats where
the experts are.
NEXT TIME: Catch Parker at next

years Corus Radiothon for the Stollery
Childrens Hospital Foundation!
In Memory of Lorna
WHILE MANY FUNDRAISERS HONOUR PATIENTS OF THE HOSPITAL,
PHOTO: COURTESY THE FLEMING FAMILY
Lorna Fleming was a much-loved nurse who worked at the Stollery for several years.
She passed away in April 2012 from a rare autoimmune deficiency, but Lornas family
continues to uphold her legacy as a caring, compassionate nurse who found immense
joy and purpose at the Stollery Childrens Hospital.
Lorna was passionate about her job and she cared very much for the children
she looked after, her mother Bonnie says. Youre not supposed to get emotionally
involved, but Lorna couldnt avoid it. Lorna once called Bonnie to talk about a
16-year-old patient who was terminally ill. As part of a grieving package, he received
a quilt; Lorna was calling her mother to ask her to make another one for him. After the
patient passed away, his family called to say that the quilts brought them comfort.
Members of the Fleming family run a hockey school. They wanted to donate
more to the Stollery, and had set a $10,000 goal. We had done very well at the
hockey school, so we thought wed take some of the money and use it for Lornas
memorial and bring our donation up to $10,000, Bonnie says, adding several
members of Lornas family have contributed to the fund. We
just want recognition for her because she was a very caring
MORE THAN
person and she loved what she did. She adds that
her grandchildren and nieces and nephews have also
benefitted from the Stollerys care.
Bonnie says that Lorna would often get home from
RAISED IN
work and hug her children and thank God for how
MEMORY OF
fortunate she was. Lorna will be forever missed, but
LORNA!
Lornas family carries on her tradition of compassion and
enthusiasm.
$10,000
Floral Morals
NEARLY THREE YEARS AGO, JUST AFTER
her fifth birthday, Julianna Larson went for a
walk with her mother, Wendy, father Jeremy and
little brother Jasper. Everything seemed fine until
Julianna abruptly suffered two seizures. Wendy
took her to the hospital, where she had two more
seizures, and she was admitted to the Stollery
Childrens Hospital for three days. It was very
scary for us because it was all brand new and
we didnt know what was going on, Wendy
says. Doctors later diagnosed Julianna with focal
epilepsy, also called partial epilepsy.
After her stay at the hospital, Julianna expressed
interest in donating toys to the Stollerys Child Life
department. My husband and I said that if she
wants to do something like this, lets support her,
says Wendy. She wanted to get new toys for the
kids staying in the hospital. I own a flower shop,
so we said, Why dont we sell bedding plants and
give all the proceeds to the Stollery? In 2013,
they raised $1,500 and in 2014 they raised $2,100.
Saturday, May 23 and Sunday, May 24, the family
will celebrate the third-annual Juliannas Plant Sale.
3RD
ANNUAL SALE
May
23-24
From
their
homebased shop in Sherwood
Park called Tickled Floral,
the family sells a selection
of annuals in four-inch pots.
Julianna helps put signs up, and
she goes to local businesses with her business
suit on and shakes peoples hands and asks
for support, says Wendy. For two days,
we sell plants like crazy; you can even bring
your planters with you and well plant them for
you with whatever you choose.
When Julianna was first diagnosed, the
doctors told her that she had a 70 per cent
chance of outgrowing the condition, and she
hasnt experienced a single seizure since. But
while the experience has taught her and her
family that these things can come out of the
blue, Julianna has learned to be confident rather
than afraid. What this means to me is that it
empowers her, says Wendy. Its taught her so
much about confidence and it means a lot to her
to help other kids in her circumstance.
PHOTO: COURTESY WENDY LARSON
foundations OF LIFE
Fitness in Motion
THE MERRIOTT YOUTH ATHLETIC FOUNDATION IS AN
internationally renowned not-for-profit organization that teaches
movement literacy to youth. The Foundation focuses its efforts on
building strong communities, One move at a time. Together with the
Stollery Childrens Hospital Foundation, it shows that going the extra mile
pays off.
The Merriott Youth Athletic Foundation runs in-school and community
programs to encourage kids to get active. Chris Merriott, a community
leader with the foundation, is enthusiastic about the partnership with
the Stollery, which began six years ago and is still going strong. Weve
been with the Stollery for a long time, she says, before detailing the
foundations $25,000 commitment to the Stollery Childrens Hospital
Foundation through a host of local events and partnerships. This includes
everything from golf tournaments and triathlons, to school programs
and after-school initiatives. The whole premise of what we do is to
encourage kids to move more and live active lifestyles, but we create
opportunities so kids can experience success in their own athleticism,
she says. We have the tools to make any child
successful with movement.
Both foundations work well together.
MERRIOTT
Both promote child safety and wellness
YOUTH ATHLETIC
trying to prevent inaction and encourage
FOUNDATIONS
movement. Together, everybody wins.
COMMITMENT:
$25,000
PHOTOS: COURTESY MERRIOTT YOUTH ATHLETIC FOUNDATION
THE COLOUR PURPLE: If you have been to the Stollery lately,

youve likely noticed the flashes of purple in hospital signage.
Its our way of showing what a difference our donors have made
in everything from life-changing care and research to critical
care, emergency and operative services to outpatient clinical
space. You, too, can show your appreciation and thanks for
TheDonorDifference. Heres how:
STEP 1: Show your appreciation.
Snap pictures of anything branded
#TheDonorDifference that has impacted
your journey through the hospital.
STEP 2: Share your appreciation. Share your
pictures and stories on Twitter or Instagram and
tag them with #TheDonorDifference.
STEP 3: Showcase your appreciation.
Visit TheDonorDifference.ca to see your
pictures/stories and to read other stories
of impact.
10
Save the Date

ATB TEDDY FOR A TOONIE CAMPAIGN
DATE: May 1-31, 2015
LOCATIONS: Visit any northern Alberta ATB Branch or Agency
Drop into your local branch and get your custom limited edition teddy
bear today! Every year ATB Financial customers and team members
raise funds by hosting fun activities and collecting donations for
childrens health in Alberta. This year, all funds raised will support the
operating room expansion at the Stollery. Visit ATB.com/teddy.
DIRTY BIRDS CHARITY HOCKEY TOURNAMENT

IN HONOUR OF JOSHUA DASILVA
DATE: May 22, 2015 silent auction
LOCATION: Average Joes, 390 Baseline Road #240, Sherwood Park
TIME: 7 p.m. to 1 a.m.
DATE: May 23, 2015 hockey tournament
LOCATION: Argyll Arena, 9933 63 Avenue NW, Edmonton
The Dirty Birds Charity Hockey Tournament is a two-day event supporting
the Neurosurgery Kids Fund at the Stollery Childrens Hospital. All funds
raised from this exciting event will help send neurosurgical children to
Camp Everest. Join us on May 22, at Average Joes for a silent auction
and then again on May 23 at Argyll Arena to cheer on the hockey teams,
enjoy kids activities and have a snack. For more information please
contact Melissa at melissadasilva@shaw.ca or at 780-406-4030.
The Stollery Childrens Hospital Foundation is honoured to have

caring people in the community creating events with proceeds
supporting the Foundation, benefitting sick and injured children.
We hope you will have an opportunity to enjoy or participate
in these activities. For more information, and a complete list
of upcoming events, visit stollerykids.com/events. For more
information on fundraising targets and expenses, please contact
the Foundation at 780-433-5437.
STOLLERY WEEK 2015
DATE: Listen live June 8-12, 2015
We are very excited to partner with 104-9 Virgin Radio,
100.3 The Bear, TSN1260, and CTV to raise much needed
funds for sick and injured children in our community. If you ever
thought about becoming a monthly donor nows the time! Tune in
to your favourite stations as they challenge their listeners and viewers
to raise money to ensure the best possible care for Stollery kids.
MYAF ZOMBIE ADVENTURE RACE

DATE: June 14, 2015
TIME: 8 a.m. to 1 p.m.
LOCATION: Devon Voyager Park, at the end of Saskatchewan Avenue
West along the North Saskatchewan River, Devon
Kids just want to have fun! Join us June 14 for our fourth-annual
Adventure Race. The kids will get wet, they will be chased, they will climb
hills, and they will crawl under ropes. We even have a division for adults.
For more information about the event or to register, visit myafkids.com.
JULIANNAS PLANT SALE
DQ MIRACLE TREAT DAY
DATE: May 23-24, 2015

TIME: 9 a.m. to 5 p.m.
LOCATION: 63 Foxboro Run, Sherwood Park
DATE: August 13, 2015

LOCATION: Participating DQ restaurants in Northern Alberta
A variety of four-inch bedding plants, herbs and tomatoes will be available

for $3.50 each. All of the net proceeds will go to the Stollery Childrens
Hospital Foundation. For more information, contact Tickled Floral at
780-278-5279, info@tickledfloral.com or visit tickledfloral.com.
STAND UP FOR LOVE BENEFIT CONCERT

DATE: May 30, 2015
TIME: 6 p.m.
LOCATION: Ellerslie Road Baptist Church,
10603 Ellerslie Road SW, Edmonton
TICKETS: $20
Stand Up For Love stems from the belief that love is what holds
the world together. The benefit concert consists of dedicated
performers and volunteers who share their talents and passion in
support of the Neurosurgery Kids Fund at the Stollery Childrens
Hospital Foundation. Call Adrianne or Lindsay at 780-953-8784 or
780-993-8229 for tickets.
For the past five years, the Edmonton region has held the national
record for the most Blizzards sold on Miracle Treat Day, and with your
help, we can do it again! On Miracle Treat Day, 100 per cent of
Blizzard Treat proceeds benefit the Stollery Childrens Hospital
Foundation, helping fund projects at the Stollery Childrens Hospital
that transform childrens health.
STEP-UP-TO-THE-PLATE
SLO-PITCH TOURNAMENT
DATE: August 15-16, 2015
LOCATION: TELUS Field, 10233 96 Avenue, Edmonton
Why not join the fun? We invite you to register a team to participate
in the tournament and enter into some healthy competition with other
local businesses. Teams play a minimum of three games, including
at least one at TELUS Field. Registration is $750 per team, and each
team is also asked to raise a minimum of $2,000 in pledges. This is a
popular event and spots are limited, so register early. To register your
team, visit stepuptoplate.com.
11
tech FILES
BY Sue LeBreton
Under Pressure
Home monitoring is now possible to check for blood pressure problems
HELP AT HOME: Now kids with hypertension can be sent home with one of five
ambulatory blood pressure monitors, which they send back to the Stollery by courier,
saving the family a hotel stay.
WHEN PEDIATRIC NEPHROLOGIST DR. ABDULLAH ALABBAS SEES CHILDREN

like three-year-old Magnus Lindberg with hypertension, he knows he is seeing an isolated slice
of the childs life. In some children, blood pressure is elevated simply by the stress of visiting the
doctor or the hospital, a condition called white coat hypertension.
The 24-hour testing lets us confirm white coat hypertension if blood pressure is normal at
home, says Dr. Alabbas. In recognition of new medical thinking that this white coat hypertension
can indicate an increased future risk, children who present with this condition return to the clinic
for another examination in two years.
For blond-haired, blue-eyed Magnus, the opposite was true. Diagnosed with hypertension at
four months old, his blood pressure was quite good. Hes a quiet child and a bit shy so maybe
that played a role, says mom Darcy Lindberg.
To monitor the effectiveness of his treatment, Magnus went home with an ambulatory blood
pressure monitor that measured his blood pressure every hour over a 24-hour period. When the
data was entered into the computer the following day, the doctor saw that when Magnus was
doing his normal activities at home, his hypertension was not controlled. As a result, his team
doubled his medicine. He
The prevalence of hypertension in now visits the clinic every
six months and is happy
children is reported to be between to leave with the small
one and three per cent. portable blood pressure
monitor. He was actually
upset when he had to return it because it came in a Cars backpack, Darcy says.
Thanks to the success of last years Stollery Childrens Hospital Foundations Snowflake Gala,
Dr. Alabbas and his colleagues at the Stollery Childrens Hospital have three additional ambulatory
blood pressure monitors coming to clinic. These new machines will bring the total number of
units to five, helping the nephrology clinic see additional patients more quickly to provide
accurate diagnoses.
The prevalence of hypertension in children is reported to be between one and three per cent.
In recent years, the prevalence in school-aged children appears to be increasing, possibly due to
12
obesity. The risk for developing hypertension is three times

higher for obese children than non-obese children.
In children, hypertension is a systemic disease, often
caused by an underlying condition such as congenital heart
disease or kidney disease. So for these children, discovering
hypertension can lead to diagnosis of another condition that
can be treated if caught early.
A prompt, accurate diagnosis can be a lifesaver. According
to Dr. Alabbas, hypertension is called the silent killer. It may
go undetected for months or years, resulting in damage to
the heart, brain, kidneys and eyes. But when hypertension
is caught early, monitored and treated, kids like Magnus can
lead an active, normal life.
As the Stollery Childrens Hospital sees patients from a
large geographic area, mainly western and northern Canada,
the new machines will ease the diagnostic process for those
living farther away. With only two ambulatory machines,
families needed to stay close to the hospital for the 24-hour
testing period. In addition to being inconvenient, this doesnt
offer doctors a true indication of normal life for the child and
could potentially affect the diagnosis.
With five machines, Dr. Alabbas hopes to send patients
home with the ambulatory blood pressure monitors for the
24-hour monitoring period. Once the test is complete the
parents can return the device by courier, saving an overnight
stay in a hotel and eliminating the additional cost and stress
to a family already worried about their childs condition.
In addition to white coat hypertension, there is a condition
called masked hypertension that can benefit from the use
of ambulatory blood pressure monitors. These cases have
normal blood pressure in the office but in the 24-hour
monitoring we can sometimes see sky-high blood pressures.
These are cases we could not have diagnosed without this
24-hour data, says Dr. Alabbas.
Another phenomenon that Dr. Alabbas has identified
with the help of the ambulatory blood pressure monitors
is children whose blood pressure is controlled during the
day, but not at night. For people without hypertension,
blood pressure typically dips in the night. If we see that
is not happening we know the childs hypertension is not
controlled.
Thanks to the enhanced use of ambulatory blood
pressure monitors, more junior hypertension sufferers will
be accurately diagnosed and treated so that they can avoid
the long-term complications associated with this condition.
More children with hypertension will join Magnus in leading
a normal life.
Our donors make a monumental

difference to the level of care at the
Stollery Childrens Hospital.
Let us show you how.
TheDonorDifference.ca
From left to right, Stollery

Nurses, Brittany, Jessica
Lynn, & Maggie
Thank you!
The Stollery Childrens Hospital Foundation wishes to thank the amazing
nursing staff at the Stollery for going above and beyond for our kids!
THE BEST
IN THE WEST
A hub for pediatric cardiac surgery and
organ transplants, the Stollery Childrens
Hospital serves one of the largest
catchment areas in the world.
1,411
211
HE STOLLERY CHILDRENS HOSPITAL IS THE ONLY
specialized pediatric health care facility in central and northern

Alberta. Located in Edmonton on the grounds of the University of
Albertas Walter C. Mackenzie Health Sciences Centre, the Stollery
serves one of the largest catchment areas in the world. But what many people
may not be aware of is that more than 40 per cent of patients treated at the
Stollery live outside Edmonton, including many from British Columbia, Saskatchewan, Manitoba, the Yukon, Northwest Territories and Nunavut.
Heres a quick snapshot of the distance patients and families travel to
receive specialized care at the Stollery Childrens Hospital, and a look at
some Stollery kids whove made the trip:
5
3,614
8
7
739
916
1,012
10
1
12
890
4,815
432
7
23
64
72
11
923
13
14
20
16
1,639
2
1
Muskaan
Vancouver, BC
Age: 7
Diagnosis: Dilated
cardiomyopathy
14
Brendan
Kelowna, BC
Age: 6
Diagnosis:
Idiopathic
pulmonary arterial
hypertension
3
Peyton
Buffalo Head
Prairie, AB
Age: 3
Diagnosis:
Gastrochisis
4
Mackenzie
Peace River, AB
Age: 2
Diagnosis:
Subglottic
circumferential
hemangioma
5
Jacob
Grande Prairie, AB
Age: 7
Diagnosis:
Hydrocephalus
2,864
6
Boston
Fort McMurray, AB
Age: 5
Diagnosis: A large
ASD, pulmonary
hypertension and
coronary artery
fistulas
7
Parker
Whitecourt, AB
Age: 4
Diagnosis:
Esophageal atresia
tracheal fistula
10
Evanna
Elias
Edmonton, AB
Age: 3
Diagnosis:
Hypoplastic
left heart
syndrome (HLHS)
Calgary, AB
Age: 1
Diagnosis: DiGeorge
syndrome, tetralogy
of fallot with
pulmonary artresia,
VSD and MAPCAs
9
Dysen
Consort, AB
Age: 6 months
Diagnosis: Seizures
11
12
13
14
15
Neala
Dillan
Keaton
Marissa
393
Scout
Lethbridge, AB
Age: 8
Diagnosis: Biliary
atresia
Lloydminster, SK
Age: 6
Diagnosis:
Hirschprungs
disease
Prince Albert, SK
Age: 5
Diagnosis:
Restrictive
cardiomyopathy
with secondary
pulmonary
hypertension
Saskatoon, SK
Age: 19
Diagnosis: Potts
syndrome
Oxbow, SK
Age: 4
Diagnosis:
Transposition of
the great arteries
and chylothorax
17
Maverick
16
Carson
Rapid City, MB
Age: 10
Diagnosis:
Transposition of the
great arteries
16
15
17
18
18
Carman, MB
Age: 2
Diagnosis: Taussig
bing, double outlet
right ventricle,
transposition of
the great arteries,
coarctation of the
aorta, narrowing of
the aorta, ASD, VSD,
and left and right shot
gun coronary arteries.
Sophie
Winnipeg, MB
Age: 8
Diagnosis:
Acute myeloid
leukemia, dilated
cardiomyopathy
secondary to
chemotherapy
368
25
26
10
3
35
103
Connect the Dots: This dot cluster graphic illustrates the number of patient
visits to the Stollery Childrens Hospital from different regions and areas across
Canada. If you want to share your Stollery story and become a member of our family network,
please call 780-433-5437 or visit stollerykids.com.
15
youth PHILANTHROPY
Stephies
RIDE
BY Jen Janzen
PHOTOS: COURTESY THE GAGNON FAMILY
A rare autoimmune disease proves no match for a philanthropic

Alberta pre-teen, her family and their close-knit community
THE WHEEL DEAL: Over its four years, Stephies Bike

Tour raised more than $180,000 for the Stollery Childrens
Hospital Foundation.
16
OU COULD SAY STEPHIES RARE AUTOIMMUNE

They expected to wait three months for a pediatrician appointment
disease sneaked up on the Gagnon family.
to open up, but once Stephies blood work came in, the pediatrician
Stephie was six-and-a-half years old when her mom, wanted to see her right away.
Sheila, and dad, Richard, started noticing that she was more
The word luck comes up a lot when you talk to Sheila about
tired than usual. But Stephie, the youngest of three kids, had just start- Stephies rare disease. Among other things, they consider themed first grade and was probably just adjusting to a full day of school, selves lucky to be referred by their doctor to a pediatrician who
they thought: nothing to be concerned about. Stephie was also losing recognized that Stephie required immediate examination from a
weight, but her parents put that
rheumatologist.
down to her little body shedding
When the pediatrician called
You really hope youve got a doctor
its baby fat. No big deal.
the Stollerys rheumatology dewith experience with this who can
This was all happening in the
partment, Stephie lucked out
guide you in the right direction,
fall of 2009, near the height of the
again: Dr. Claire LeBlanc could
says Sheila Gagnon. That was a
H1N1 (influenza) scare. Schools
see Stephie right away. The
all over the country were recomStollerys outpatient clinic was
huge plus for the Stollery.
mending lots of hand washing,
packed parents were jumping at
and St. John XXIII School in Fort Saskatchewan was no exception. So their childs every sniffle and cough, fearful of H1N1. Sheila was
when Stephie developed a rash on her hands, her parents thought it dismayed when she saw the crowded waiting room. I remember
just was a reaction to all of the soap.
thinking were going to be waiting for hours, she says, but within
Back then we had an answer for everything, Sheila recalls. She took 10 minutes a nurse came out and escorted Stephie to see Dr. LeStephie to her family doctor for the hand rash to rule out warts. Stephie Blanc. After a two-hour assessment, Stephie had a diagnosis: juvenwas given hand cream but despite using it for about six weeks, her fin- ile dermatomyositis (JDM). The disease is so rare that it could have
ger and toe joints swelled up painfully. Sheila took Stephie back to the easily gone undetected for a few more months, and so potentially
doctor, who ordered blood work and referred Stephie to a pediatrician. fast-moving that any delay could have been deadly. Treatment needThats when the ball started rolling so fast it was incredible, Sheila says. ed to start immediately.
17
BEST BUDS: Foundation mascot Dr. PatchUp and Stephie

Gagnon at one of the young philanthropists fundraising
events in Fort Saskatchewan.
OCCURRING IN ABOUT TWO OR THREE CHILDREN PER MILLION,
around her. When a nurse came to take Stephies vitals every 10 minjuvenile dermatomyositis is an autoimmune disease in which the utes Stephie would simply lift her arm out of the blanket.
bodys immune system attacks its own blood vessels. Initially it causes
JDM starts by attacking the bodys joints and muscles before movinflammation, which appears as a rash, and muscle weakness appears ing onto the organs. It moves quickly, and a few weeks can signifia few weeks or months later. The progression of the disease is variable, cantly increase the damage done to the body, increase difficulty for
but it can be life-threatening, especially if the lungs and heart become treatment and lower the odds for remission. Luckily, Stephies organs
inflamed and weakened.
were still okay, but the disease had a major effect on her legs. She
Youll never hear Sheila complain about Albertas healthcare sys- was still able to walk, with difficulty. Getting up from the floor was
tem. Stephies treatment required her to spend 11 days at the Stol- a struggle, sitting down was a struggle, opening doors was a struglery, during which time she had every vital organ tested as soon gle, Sheila says. She couldnt put socks on her feet. At the hospital,
as she was admitted in order to
when they saw their little girl try to
gauge the damage that JDM had
When planning the 12-kilometre race, get up, Sheila says she and Richard
already wrought on her little
were shocked. How did we not
the Gagnons were hoping for 30 people see it before? she asks. We just albody. Everything moved so fast,
to enter. They ended up with 88 riders. ways had a reason for everything.
Sheila recalls.
The disease is, in fact, so rare
Stephie weighed 45 pounds
that treatments for it vary around the world. You really hope youve at the start of her treatment, down from her previous weight of 50
got a doctor with experience with this who can guide you in the right pounds. She was a tiny child, taken around the hospital in a wheeldirection, says Sheila. That was a huge plus for the Stollery.
chair because she had trouble walking by herself.
Treatment for Stephie meant four days of intravenous medicine including prednisone, a steroid, and methotrexate, a drug usually used THE MEDICINE DID ITS JOB, AND WITHIN A MONTH, THANKS
for chemotherapy but also effective in rheumatological conditions. to physiotherapy (And lots of yoga, recalls Sheila), Stephie was reThe doses were high, and it was hard for Sheila to watch her daughter gaining most of her strength and flexibility. But the prednisone she
absorb such vast amounts of medicine. I just remember her crying continued to take at home had side effects. It plays on their emobecause she could taste the chemical, even though it was going into tions, Sheila explains, describing Stephies anger, crying and emoher arm. We were giving her food to try to get the taste of the chemical tional outbursts. Through the Stollery, the Gagnons had access to a
out, Sheila says. Stephie started to shake and Sheila put a blanket psychologist, and Sheila said it helped the whole family. You dont
18
know how to react to certain things. Its the medicine, its not your
child, and you want to parent correctly, Sheila says, adding that part
of the benefit of the Stollery is that it makes sure the whole family is
coping. The Stollery makes sure everyones okay, that parents are getting help, her brothers and sisters were also getting help, and Stephie
was helped because you cant stop the medicine.
The medicine also caused abrupt changes in Stephies growth. She
went from 45 to 75 pounds in just five weeks and stayed there for four
years. The medicine is also known to halt growth for up to two years.
The effects are lasting: Sheila says the doctors predict Stephie will be
about two inches shorter than she would have otherwise been.
Another side effect was a weakened immune system to the point
where even a simple cold could have made Stephie very sick. Two
weeks after her treatment started, when she decided she was ready
to go back to school, a care team made sure that every surface was
disinfected in the rooms Stephie was going to be in, wiping down surfaces with antibacterial wipes. If a child in Stephies class had a fever,
the school would call Sheila at work to let her know. We could send
her to school knowing they would do everything they could to keep
her safe, Sheila says. It was a huge relief on our end.
This diligence went on for four years. Each new teacher was just as
careful as the last, Stephies classmates remaining considerate of her
weakened immune system. Thanks to this careful attention, it was
more than four years before Stephie ever got a fever.
NOW 11 YEARS OLD, STEPHIE IS IN REMISSION FROM JDM.

Shes active, happy and, by all accounts, a normal pre-teen. But JDM
never goes away for good, and Stephie will always need to be cautious about preventing a flare-up. The three things that can cause
the disease to return are sun exposure, stress and high fevers. In fact,
Stephie has had two flare-ups since 2009. One was in the middle of
December after she was outside for 20 minutes with no sunblock.
The telltale rash started to appear on her joints, and her medicine
was scaled up for a brief time.
To keep the disease dormant, Stephie needs to be extremely cautious around the sun, applying sunblock every day, whether its
warm or cold, cloudy or sunny. And physical activity is a must to
keep her stress levels down and maintain flexibility and strength in
her muscles and joints. When they were explaining that we need
to be healthy, low stress and keep our activity up, my husband and
I are thinking, This is great news, Sheila says. When your child
has a life-threatening disease and what you do to help it is what you
should be doing anyway, its fantastic. Swimming and biking were
two of the best activities: lots of exercise but very low-impact.
Thanks to the excellent care provided by the entire rheumatology
team, Sheila and Richard wanted to give back to the Stollery. When
your child is sick, all you want to do is get them healthy again,
says Sheila. When you see the work and effort from everyone at the
Stollery, how kind everyone is from the person booking the appointment to the person giving the needle to your child, you just want to
give back.
Her parents had two criteria for their event: they wanted it to
have a family focus to reflect the Stollery and be something that
Stephie could participate in. They chose a bike tour around Fort
Saskatchewan and Strathcona County. Always hosted in their community, the first-ever Stephies Bike Tour happened in 2011, and the
event grew every year. Initially the event started with a 30-kilometre
adult bike tour with a five-kilometre Family Fun Tour. As the event
grew over four years, it developed 12-kilometre, 45-kilometre and
85-kilometre routes, in addition to the five-kilometre.
The success of this event in attracting community support for the
Stollery really showed last year. When planning the 12-kilometre
race, the Gagnons were hoping for 30 people to enter. They ended
up with 88 riders.
The Fort Saskatchewan community rallied around the cause with
local businesses challenging each other to donate funds, elementary
schools holding bake sales, and even a special pub night, hosted by
a local ladies hockey team, which raised $15,000. The Stollery is in
our community, Sheila says. To be a 45-minute drive from a childrens hospital that specializes in everything is amazing.
Over its four years, Stephies Bike Tour raised $180,000 for the
Stollery Childrens Hospital Foundation. It was a rewarding event
that truly helped the Gagnon family feel like they were giving back
to the hospital that did so much for Stephies health. At the end of
last year, Sheila and Richard knew they couldnt do a 2015 event. It
was a hard decision, Sheila says. It was really, really hard. But, she
adds, all three Gagnon children are healthy and busy, which is the
best news we could ever have, but there are only so many hours in
each day, and Sheila says their final decision came down to their
familys increased needs.
Stephie hasnt required any medication for two years, but she
will be a Stollery kid until shes 17, returning every six months
for an assessment. But the Gagnons know that if she ever gets
another JDM flare-up, the Stollery team will swoop in to help.
The confidence you get as a parent, knowing youve got that
support system even when shes in remission, thats amazing.
Theyre always there for you.
19
ON THE PULSE: (Clockwise from top) Pediatric

cardiologist Dr. Jeffrey Smallhorn, who is among a
rotating group that makes up the Stollerys cardiac
outreach team, checks child cardiac patient Alyssa
Butlers heart; RN Pat Aldridge puts a smile on Alyssas
face; and a tiny patient, Blair Schimke, waits her turn
for her examination by the outreach team.
20
From the
HEART
BY Robbie Jeffrey
The Stollerys cardiology outreach program takes its expertise to

communities across the province and to families like Alyssas
PHOTOS: NICKI WOHLAND
OU CANT TELL SHE HAS A CONDITION,
says Ian Butler of his two-and-a-half-year-old

daughter, Alyssa. Shes giggling and sticking her
tongue out at him from across the room as Dr. Jeffrey Smallhorn, a pediatric cardiologist, listens to her heartbeat, and
her unbridled enthusiasm proves his point.
Alyssa has a heart block; the nerve impulses that control her heartbeat are irregular causing her atria and ventricles to beat out of sync.
Once every six months, for 24 hours at a time, Alyssa wears a Holter
monitor, a portable recording device that reads heart activity. Her
average heart rate is 68 beats per minute, which is slow but not dangerous. But over the course of a day, it varies wildly. A diary that Alyssas parents use to keep track of her heart beat reveals a range from
54 to 120. For the moment, however, her condition is invisible as
she bounces around the doctors office. She has a six-year-old sister
she can keep up with, Ian says. She likes to build snowmen and go
ice-fishing too, and last time she even caught more fish than I did!
Alyssas mom Samantha MacDonald is there too, and as a nurse
helps Alyssa onto a scale, Samantha reflects on her daughters condition. Alyssa was so small when she was born, she remembers, as her
daughter clocks in on the scale at a healthy 26 pounds. Shell get a
pacemaker at some point; we just dont know when.
Samantha has lupus. Some components called antibodies crossed
through the placenta during pregnancy and damaged the electrical system of Alyssas heart, and doctors have been monitoring Alyssas heart
since she was in the womb. Alyssa needs a checkup every six months,
but Dr. Smallhorn says she may be able to go for years before needing
a pacemaker. Sporting an ear-to-ear smile, Alyssa gives him a high-five.
Ian and Samantha live in Bentley, Alberta, and drive 42 kilometres
to the Red Deer Regional Hospital Centre for their biannual checkup,
waiting to see the doctor. But when Alyssa was born, Samantha had to
drive to hospitals in Edmonton once a week for a special ultrasound
almost 300 kilometres each trip and hours spent waiting. And with
Ian working farther north, near Cold Lake, she had to make the trips
unaccompanied.
After a while, however, the family was able to work with the Stollery Childrens Hospitals outreach team a team of registered nurses,
cardiologists and echo sonographers who travel across Alberta and
the Northwest Territories to underserved or hard-to-reach communities. Both Dr. Smallhorn and Pat Aldridge the nurse helping Alyssa
onto the scale are with the outreach team, though they seem right
at home when treating a child from Bentley in a Red Deer hospital.
Samantha had already developed an immense respect for the Stollery, from her visits just after Alyssa was born. The staff is amazing
theyre very informative, genuine and patient, she says. They help
you understand, and they encourage you to ask questions. But her
appreciation goes even further than that now.
The challenges of raising a child are enough on their own, and even
more so when that child has a condition like a heart block. Compounding factors like travel and unexpected expenses can tug at the
seams of relationships until they fray. The goal of the outreach program is to ultimately ease these burdens on the childrens families,
and to deliver to them the care they deserve without the added stress.
Ian, for one, can actually accompany Samantha to the hospital visits
now. And as Alyssa playfully sticks her tongue out at him again, the
outreach teams impact on this family is evident.
THE STOLLERYS OUTREACH TEAM FIRST CAME TOGETHER

in the mid-1980s. Today, each visit requires a team of three, including
an RN like Pat, and an echo sonographer, a technician who specializes
in ultrasound testing of the heart. But the team of three or four rotates
among eight or nine pediatric cardiologists and two nurses.
The team also graciously accepts the assistance of pediatric cardiology residents or fellows trainees who are hungry for experience. This
program is willing to use all the help it can get the Stollery treats the
second-highest number of pediatric surgical cardiac cases in Canada,
and the outreach team treats the equivalent of nearly 15 per cent of
the pediatric cardiology programs volume, totalling between 800 and
1,000 patients per year. The team visits Yellowknife, High Level, Fort
McMurray, Red Deer and Grande Prairie. The largest clinics are in the
21
Dr. Dyck credits much of the programs success to his colleague,

Edie Ungstad, a nurse who has been part of the outreach program
for 20 years. She negotiates with the participating health centres to
prepare for the teams visits. We draw up a schedule about six months
in advance and co-ordinate with the hospitals that were visiting to
make sure they can accommodate us, Edie says, before explaining
how the team works with the host clinic to ensure proper use of space,
time and resources. When we actually get there, we run an outpatient
clinic, so we only see ambulatory patients, similar to what we do [in
Edmonton] but at higher volumes. If were going the distance, we
want to see as many patients as we can. The outreach team also tries
to establish a long-lasting, personal connection with the people they
serve. If we see the same people consistently, theyll be more forthcoming with their concerns, she says.
The biggest change has been the increase in volume, partly in
tandem with the provinces population growth but also due to the
growing awareness of the outreach team, which increases the number
of referrals. The team has looked into technologies that could assist
them, such as remote stethoscopes and video conferencing, but found
that ultimately, there is no replacement for human contact. The team
works with local hospitals to offer a well-rounded range of services,
including social workers and dietitians, as it does in Edmonton. We
often have to communicate with the local dietitian and physiotherapist and make arrangements and those guys are stretched too, Dr.
Dyck adds.
There are still physical obstacles, as well, such as travelling with
and operating equipment. While the outreach team is able to use the
DAY TRIPPER: RN Pat Aldridge checks Alyssas height during her
host centres equipment, often its not as specialized as what the team
examination by the team in Red Deer.
brings with them. Among these items is the Vivid E9, a cardiovascular
ultrasound system built specifically for 2-D imaging, a purchase made
latter two cities, which the team visits at least once a month, while possible through money raised by the Stollery Childrens Hospital
the frequency of visits to the other regions depends on the demand. Foundation.
Yellowknife, for example, gets nine visits; High Level gets four. But in
And to make sure as many people as possible receive their required
every community, the demand is growing.
ultrasound, technicians like Samad Khan, lead sonographer in the
The outreach team began with the desire to make sure patients Stollerys pediatric echo lab, squeeze in nearly twice as many patients
with complicated conditions who live in other communities can get in an outreach trip as they would at the Stollery. Speaking about Sagood care, says Dr. John Dyck, an outreach regular. In Yellowknife, mad, Edie says, If we had the resources to send two people with his
for example, 95 per cent of the
skill and expertise, wed need to
people we see are First Nations and
send two machines.
We get to know the families
Inuit, and theres just no other way
Samad laughs, and explains
because we follow the children year
for them to access care, he says.
how expensive the ultrasound
after year. You build a relationship,
Eighty per cent of the patients are
machines are and why this would
says nurse Edie Ungstad.
kids, but the team also sees many
be difficult if it wasnt for the help
young adults with congenital heart
of the Foundation and its donors.
problems. In Yellowknife, the team continues to see a large number of These days, they cost around $170,000, excluding the probes (transolder adults. By the time they get to see us, many people have already ducers), which each cost between $10,000 and $15,000. The team
flown from Cambridge Bay to Yellowknife, Dr. Dyck says. A lot of has three transducers.
them for cultural reasons or otherwise dont want to come to EdBut the challenges pale in comparison to the overall benefits. Its
monton. So there are adults well see on an ongoing basis.
an enjoyable day its always busy and long, but we like visiting the
Before the team was formed, Dr. Dyck explains that pediatric cardi- other centres and having a change from the normal workday, says
ologist Dr. Ruth Collins-Nakai conducted a cost analysis on the im- Edie. And we get to know the families because we follow the chilpact an outreach team would have on families who need to travel dren year after year. You build a relationship. Even Samad, whose
exorbitant distances for proper care. It was so outrageously cost- outreach day-trips essentially require two days of work, doesnt mind.
effective that it didnt make sense not to do it, he says. The cities Patients always say, I have three children I cant come all the way to
that the outreach team visits are selected based on demographics: Fort Edmonton, leaving my job and my kids, he says. So its a great help
McMurray has a large transient population due to the fly-in-fly-out for those who cannot afford to come all this way.
workers employed in the oil sands; Red Deers population is skyrockDr. Dyck agrees. Were really trying to deliver the same standard
eting; and Grande Prairie services people travelling from northern of care to them, out there, as they get here, in Edmonton, and build
B.C. for health care. Meanwhile, patients in Yellowknife would have relationships with people in those communities. Health care is not
to drive almost 1,500 kilometres for a standard pediatric checkup just about cardiology its about talking to people in their own
in Edmonton.
communities and helping them live in their own communities.
22
BY Shelley Williamson
WHY I donate
For the Kids

Monthly Stollery donors are moved to give after hearing
stories of impressive care and first-class treatment
not to have spent any significant time at the Stollery Childrens
Hospital with a child of his own, but he says the stories of
care and compassion that come out of the Edmonton facility
from people hes met have had a huge impact on his family.
Over the years, Bill and his wife Judy have seen their
friends with children experience everything from cancer
treatment to major surgery at the Stollery. He has always
been impressed by the care that all family members, not just
the sick or injured child, receive. A friend of my daughters,
when their daughter was born, she needed a liver transplant.
The Stollery looked after not only her, but her whole family,
he explains. In the end, they took part of the fathers liver
and transplanted it in her. Its got to be eight or 10 years ago
now since that happened and shes fine.
Another friends granddaughter was diagnosed with
cancer and underwent her chemotherapy at the Stollery
Childrens Hospital. It was the treatment, not just of the
child but of the whole family, and the care that they found
there, Bill says. When you are going through a very scary
time in a childs life, they make it fun as well. They looked
after her, and her mother. Again, fortunately she recovered.
A retired elementary teacher with 32 years of experience
in classrooms from Marwayne to Clandonald, Alberta, Bill
has seen many of his students frequent the Stollerys halls.
When I was a teacher, there were different times when
the kids would have to go to the Stollery for something
and again, it was always such great care they were given,
he says.
Everyone has a Stollery story. Bill says its these personal
accounts from kids and their families hes witnessed
year after year during the Stollery Childrens Hospital
Foundations Corus Radiothon that finally moved him
and Judy to donate a practice they have repeated every
month since 2002.
They said you can be a monthly giver. So I just decided,
hey, I can afford that. They were looking for $25 a month so
I called up and gave that. Then the next year, I think I gave
$50 a month. Being the only childrens hospital in northern
Alberta, its definitely important to give, he says.
This year, donations like the Carters will go toward a
necessary and important goal: the Stollerys operating room
expansion and redevelopment campaign. Every dollar gets
the hospital closer to making this needed growth a reality,
says Cyndi Matthews, manager of annual giving at the
Stollery Childrens Hospital Foundation. We count on those
donations every month to help us meet our budget goals all
PHOTO: COURTESY BILL CARTER
BILL CARTER CONSIDERS HIMSELF FORTUNATE
GIVING BACK: Judy and Bill Carter have been giving

a heart-felt donation to the Stollery Childrens Hospital
Foundation every month for more than a decade.
year long, so they are very important to us. Cyndi notes that proceeds from just 100 monthly
donors that give $25 a month quickly adds up to $30,000 a year, and if we look at that in terms
of equipment, or our campaign, it really makes an impact on childrens health.
Its nice for donors like Bill and Judy to see where their hard-earned dollars are going, says
Cyndi, adding that they are making a permanent contribution to the Stollerys dedication to
excellence through the expansion plans, which are slated to take three years. We are going from
five existing, very outdated operating theatres and we are expanding to 10. We will build five new
ones and thats what their money will fund. Then once we move into the five new ones, the
others will be redeveloped, and updated.
Now a grandfather to twin seven-year-old boys, Bill is grateful they have managed to stay
out of the hospital, although one just broke his arm. Luckily, they are healthy except for the
occasional slip and fall, he says, crediting the mishap to boys being boys. Should anything more
serious happen, hes delighted to have, in his home province, a facility like the Stollery, which he
will continue to support regularly.
Bill, who now spends some of his retirement time as a volunteer in Victim Services, humbly
admits he comes by his philanthropic pursuits honestly. As part of my Christian service I believe
in supporting worthwhile charities and, having been a teacher, I have always had a thing in my
heart for kids, he says.
#THEDONORDIFFERENCE: When you include this hashtag in

your Twitter or Instagram posts about donors like the Carters,
TheDonorDifference.ca will re-post them for all to read and
enjoy. For more information visit TheDonorDifference.ca
23
LEADING THE PACK: Dr. Lawrence Richer, seen here with

the Medoc Pathway for Contact Heat Evoked Potentials
(CHEPs), which was funded by the Stollery Childrens
Hospital Foundation, is among the first specialists to look
into possible relief for persistent migraines in children.
24
one TO WATCH
Headache
HELPER
BY Samus Smyth
A pediatric neurologist helps ease the ache of migraines in children
PHOTO: VINSON LIM
OU COULD TAKE AN ADVIL, YOU COULD TAKE A
Tylenol, or you could visit Edmontons Dr. Lawrence Richer.

Simply put, the researcher quells the aches of the mighty melon.
Richer isnt afraid to point out that he is one of the first in
the country to specialize in helping children with headaches, an unchartered and frustrating matter that he has been focused on since 2001.
Like every small town Canadian boy, Lawrence Richer was supposed
to play in the National Hockey League. And just like almost every Canadian kid, a career as a professional athlete never materialized. It was
when he had the chance to travel from his home in St. Paul to a relatives
place in Bonnyville that he first learned what profession would ultimately fulfill him. A relative of his was a quirky doctor with his own office,
his own practice and above all, the ability to make pain dissipate. It was
sort of that notion that I could help others, he says. I was already into
science and I thought it was a good blend.
He has been associated with the Women and Childrens Health
Research Institute (WCHRI) at the University of Alberta since its
inception in 2007. At that time, there was a movement to have support
for research data management. Soon, Dr. Richer was placed in charge of
the data management core and he has been at the forefront of various
research initiatives geared at improving the health of women and
children ever since.
To say that WCHRI was a new and improved version of some prior
institute would be a major overstatement. There was no institute prior.
There was just nothing. You fought for the same pot of funding that
everyone else did, and you fought at a disadvantage in that generally
children and womens issues are under-represented in medicine, says
Dr. Richer. Children are literally and figuratively small so it became
difficult to make a stand, and women are often ignored in research, so
this became a fantastic opportunity to support women and childrens
health, he says.
He is proud to be a member of the U of A team, who he calls national
leaders not only in medicine but also in recognizing the needs of women
and children.
Dr. Richers research focuses predominantly on three interrelated
areas: functional changes in the autonomic nervous system (ANS)
in children with migraines, brain injuries and pediatric autonomic
disorders in relation to clinical outcomes and novel therapeutic

targets; evaluation of therapeutic strategies for the same disorders; and
the integration of clinical and research informatics to support translational science, clinical trials and health outcomes research.
A pediatric neurologist by training, Dr. Richer is most often referred
his patients for headaches. A third of his referrals are for headaches in
children. Generally, hydrating the body, an over-the-counter pain medicine and a good nights sleep with the blinds closed should solve this
common conundrum, but there remains a small portion of the child
population that have migraines which refuse to be dismissed that easily.
They are struggling to get to school, struggling to stay in school. We
can take MRIs and look, but there is really no test to show what is wrong
and yet they live with the pain, says Dr. Richer.
The suggestion of drinking lots of water is a wise one, founded
in fact, at least for most. Dr. Richer conducted a study, funded by the
Stollery Childrens Hospital Foundation through WCHRI, in which he
found that a headache can be relieved through hydration. But for those
suffering migraines two or three times a week, it is a complex issue that
goes beyond just guzzling a couple of litres of water.
He admits that the work can be frustrating in that it sometimes feels
that nothing will work. But its his dedication and perseverance that
helps him through the struggle. Families and the kids are happy you are
sticking with them. I dont say to them I cant find anything, you must
be making this up, they are happy that I am willing to listen, he says.
Yes, there are over-the-counter painkillers, but Richer says very little
exploration was done to see if anything else could work. After years of research, there are now a number of medications proven to work in adults
that can also help children. I have developed a comfort with using other
medicines that work, he explains. With a growing need for more specialists, Dr. Richer is grateful that there are new doctors heading down
the same path as him, spreading their expertise across the nation.
With knowledge that there is help on the way, Dr. Richer is at ease.
To completely relieve himself of stress, he spends time with his family
in Edmonton and exerts himself in a new passion: CrossFit. He feels
stronger and fitter but promises that, despite his first-class medical
reputation, he has modest expectations for his new activity. You wont
be seeing me on TV anytime soon, he muses.
25
team WORK
A Lot to
SWALLOW
Stollerys speech and audiology department helps
children with eating and hearing issues
BY Samus Smyth
ELISSA AND CORY PITTENDREIGHS THIRD CHILD the moment it goes in their mouth to when they swallow, she explains.
was born without an ear. This alone would be a big obThere are times when we may be eating, socializing and talking,
stacle for any family to overcome, but for the now three- and then we start coughing and choking, and people will sometimes
year-old Koby, it was only the beginning.
say, Oh, it went down the wrong way. This is exactly what is happenWhen he was born, we thought that his ear would be his biggest ing. Most of the kids we see dont always respond the same as we do
issue. It turned out that was peanuts compared to his swallowing because they have become so used to that sensation that they do not
problems, says Melissa.
cough this is why we do the swallow X-ray, Wendy says.
Like many kids, Koby was a noisy eater. During a routine
After the diagnosis, it was determined that Koby was aspirating
checkup on his ear, a physician at the
food and fluid into his lungs. To combat
Stollery Childrens Hospital noticed that,
Despite his decrease in visits to this, thickeners were added to his food
when Koby was eating, the crunching and
liquids to prevent them from taking a
the Stollery, Kobys relationship and
grinding sounds he made seemed abnorwrong turn when he swallowed. His food
with his contacts in audiology was converted into what was essentially
mal. It was shortly after this observation
and speech language pathology a consistency as thick as pudding to
that Koby was referred to another clinic at
the Stollery to examine his breathing.
help the swallowing process. Although
teams remain close.
Here the Pittendreighs met Wendy
this helped, Koby eventually caught
Johannsen, a speech language pathologist with the Stollerys speech pneumonia due to his aspiration and required a nasogastric feeding
and audiology department. One of Wendys primary roles is to detect tube, a device that ran from his nose down into his stomach. He would
feeding and swallowing disorders.
have to wear the tube for nine months.
When you and I swallow food, it goes into our stomachs; with
His mom Melissa played an important role in his care; she stayed at
many of the kids that I see, the food goes into their lungs and, as a the Stollery Hospital for a week to learn about the tube functions and
result, they may cough and choke while swallowing and can get fre- how to insert it properly. If the tube came out, it was her responsibility
quent colds, illnesses or pneumonia. We are making sure that when to place it back in correctly. What made the process slightly smoother
they swallow it goes down the right tube, explains Wendy.
was the relationship the family developed with Wendy.
To determine the severity of Kobys complications, he was put
She just knows what she is doing and she is very honest, says
through a clinical feeding and swallowing assessment followed by a Melissa. When we asked her opinion when we had the option to go
swallow X-ray or video fluoroscopic swallow study (VFSS). It is a dy- through with the surgery and she said that if it was her child then she
namic study. It allows us to see where the food and liquid is going, from would do it because then they are able to see more inside of Koby.
26
PHOTO: BUFFY GOODMAN
DYNAMIC DUO: Julie Kremer, left, and Wendy Johannsen,

part of the Stollerys audiology and speech language
pathology department, are key players in helping kids with
hearing and swallowing difficulties.
Koby underwent surgery in the spring of 2014. As a result, he
no longer has issues swallowing and no longer requires the tube.
He is now only required to visit the Stollery Childrens Hospital
twice a year.
ear, BAHD can increase hearing in noisy situations and help localize
sounds, Julie explains. A soft band houses the device worn usually
behind the ear and placed on the skull. The soft band may be replaced
by a surgical procedure to implant the device behind the ear under the
skin. This surgical procedure is not an option until the child is older,
KOBY CONTINUES TO USE A HEARING AID AND WILL REQUIRE usually around nine years of age. Koby is followed by the Institute for
one for the rest of his life. He currently uses a BAHD, or bone-anchored Reconstructive Sciences in Medicine (iRSM) for his BAHD management
hearing device, that Julie Kremer,
at the Stollery.
the team lead of the speech and
Despite his decrease in visits to
It was determined that Koby was
audiology department at the
the
Stollery, Kobys relationship
aspirating food and fluid into his
Stollery Childrens Hospital,
with his contacts in audiology and
lungs. To combat this, thickeners
explains is a type of the device
speech language pathology teams
were added to his food and liquids
based on bone conduction.
remain close. This is especially true
to prevent them from taking a wrong
The BAHD hearing aid, she
of Wendy.
says, is primarily suited for people
Koby loves her and is very much
turn when he swallowed.
who have conductive hearing
at ease with Wendy. He was just a
losses, single-sided deafness or mixed hearing losses and who cannot one-year-old when he met her, but now we are just going to see Wendy.
otherwise wear in-the-ear or behind-the-ear hearing aids.
He doesnt like when we say We are going to the hospital; he likes
As Koby does not have an ear, by bypassing the outer or middle when we say We are going to see Wendy, says Melissa.
27
MEET THE specialists
LIFE
BLOOD
BY Matt Beauchamp
Pediatric thrombosis and hematology nurse practitioners

make the course of sick childrens lives easier
HE STOLLERY CHILDRENS HOSPITAL IS FULL OF
continues to increase. The most commonly used drug is warfarin

dedicated professionals working to improve the lives (Coumadin). Successful warfarin management is complex, requiring
of their patients. In this issue of Heroes, we focus on two frequent international normalized ratio (INR) blood testing and dose
pediatric nurse practitioners who provide care and com- adjustments. This frequent testing can be a burden on the children as
fort to make the day-to-day lives of their patients and their families well as their families.
more manageable.
Home INR meters provide a safe, effective and convenient
Mary Bauman and Mary Anne Venner are nurse practitioners who method of performing their blood tests at home using a finger
independently conduct patient assessments, manage disease, order poke blood sample, says Mary. Learning from patients and
and interpret diagnostic tests, make referrals, prescribe medications understanding their challenges motivated KIDCLOT to develop
and perform specific procedures, working as colleagues rather than a program where children receive home INR meters for Warfarin
under supervision of a physician.
management. The program has supported over 400 children and
Mary Bauman works in the KIDCLOT program, which cares for chil- their families across Western Canada to use this technology to
dren with, or at increased risk for, blood clots (pediatric thrombosis). manage their warfarin therapy.
My role provides me the opportunity to consult, assess and treat
KIDCLOT targets child-focused interventions which seek
patients in the acute care setting then follow them through to dis- to improve patient health-related quality of life as it relates to
charge home and long term, says
thrombosis and antithrombotic
Mary. Within this role I manage
therapy. This has included varied
The hematology program at the
and oversee the outpatient pediatmodels for use of home INR
Stollery Childrens Hospital works
ric anticoagulation program.
monitors, testing and warfarin
with children with diseases of the
Mary treats children with acute
management. The program is
and chronic health conditions reconstantly being modified as a
blood and bone marrow.
quiring anticoagulation for varied
result of patient feedback which
durations. Many children born with heart defects require long-term provides evaluation of educational tools and strategies in addition to
anticoagulation (the use of blood thinners), as a result of surgical or evaluation of patient clinical outcomes. Warfarin self management is
medical interventions to correct their heart defect.
now our standard as it improves patient outcomes and minimizes the
The Stollery Childrens Hospital is the largest pediatric cardio- effect of antithrombotic therapy on day-to-day life.
surgical centre in Western Canada, providing care to children across
The Stollery Childrens Hospital Foundation supported the
the four most western provinces and territories.
purchase of a number of home INR meters that are provided to
What I love most is the interactions with children and their fam- patients. The number of meters provided to children in Alberta,
ilies, and learning from them, says Mary. These interactions pro- Manitoba, Saskatchewan and northern B.C. has expanded
vide the basis for clinical and research questions evaluating patient exponentially over the past decade to over 400, says Mary. These
outcomes with resulting practice and policy change to improve for meters provide the foundation of outpatient anticoagulation
children locally and internationally.
information at Stollery Childrens Hospital which now hosts the
The number of children who require long-term anticoagulation largest most developed home monitoring program internationally.
28
PHOTO: KELLY REDINGER
HEALING HANDS: Nurse practitioners Mary Anne Venner,

left, and Mary Bauman work with children with acute
and chronic blood and bone marrow issues at the Stollery
Childrens Hospital.
MARY ANNE VENNER IS A NURSE PRACTITIONER AND AN

integral part of a clinical team that includes pediatric hematologists.
Hematology program goals include excellence in patient outcomes,
family-centred care, education and research. The programs patient
population is increasing significantly.
The hematology program at the Stollery Childrens Hospital works
with children with diseases of the blood and bone marrow: thalassemia, diamond blackfan anemia (DBA), aplastic anemia, bleeding disorders, children with abnormal hemoglobin, platelets or white
cells, and children with sickle cell disease. As part of her role, Mary
Anne helped develop a comprehensive sickle cell clinic and inpatient/
outpatient program at the Stollery.
Blood transfusions are a part of some childrens treatment in the
hematology program, but frequent red cell transfusions can result in
the child receiving extra iron from the transfused blood. Over time
this iron can accumulate in the liver, heart, pancreas and kidneys, and
even impair these organs function. If left untreated, iron overload can
cause mortality.
Children who require frequent blood transfusions, whether due to
disease or as part of undergoing a stem cell transplant, usually require
chelation medications to remove iron and reduce organ damage.
To this end, the hematology program has developed an outpatient
CRONO pump chelation program. Mary Anne organizes the program
and educates families about this specialized treatment so that the
daily chelating infusions can be given at home by the parent using the
pump (usually at night), rather than in frequent visits to the hospital.

The blood products from the Canadian Blood Services are vital
and life saving for these children, says Mary Anne. These children
undergo frequent trips to the hospital and require close clinical monitoring with significant patient and family commitment.
Without equipment like the Crono pump that is small, portable
and encourages strong adherence to a chelation program, there
is risk of iron overload. Such complications can significantly affect
quality of life, increase hospitalizations and shorten life expectancy.
It is important that children and teens receive excellent chelation
treatment in childhood to become healthier adults, Mary Anne adds.
When the Hematology Program wanted to initiate this new mode
of treatment, there was no formalized program.
The Stollery Childrens Hospital Foundation was attentive to this
need identified by the hospital and provided a grant to assist in purchasing a small number of the pumps for loan, in a timely way to
help bridge the funding, says Mary Anne. We greatly appreciate the
Foundations support of pediatric hematology program patients.
ROLL UP YOUR SLEEVES: June 14 is

World Blood Donor Day so if you can, give
generously. Your donation can help children
in the hematology program amongst many
others have a healthier, fun-filled summer.
29
alumni FILES
BY Cory Schachtel
Stollery Success Story

Young womans hospital history reflects on an
adolescence that almost never was
PHOTO: CHAD MOVOLD, VIEWPOINT PHOTOGRAPHY
THANKFUL: Jillian Pineau and

her fianc Blake are grateful for
the excellent care the Stollery
Childrens Hospital provided
Jillian after learning she had
leukemia at age 11.
WHEN JILLIAN PINEAU LOOKS BACK AT THE

beginning of her life growing up in Fort McMurray,
what stands out most in her mind is her family. As the
middle child between two brothers, there were typical
trips to swimming pools, soccer fields and skating rinks,
and years of developing friendships within the idyllic
neighbourhoods where she lived. Always active and
never shy, Jillian swam, ran and skated with anyone who
would join her, a contagious smile beaming from her face,
sparking many lifelong relationships.
The warm feeling of
family
only intensified
I look back at the Stollery as a
with the birth of her
positive place, even though its younger brother: I
where I went through something wanted to be his mom,
so horrible. Its because of Jillian says. I wanted
the people who are there, the to raise him as my own,
environment, and my family and which can be tough for a
five-year-old.
friends, says Jillian Pineau.
Jillian liked school but
did not excel, she says, in
large part due to her birthday being late in the year, which
made it difficult for her to keep up with her age group.
She credits repeating the sixth grade and developing a
strong connection with multiple English teachers over the
years, with sustaining her love of learning. They allowed
30
you to think about the subject more, beyond reading the

texts, she says. I actually enjoyed Shakespeare because
of them, which I dont think most students do.
Still, she was more athletic than bookish. I loved
running, and was on the track team in Grade 6. I loved
being active outside, playing soccer and basketball.
Ive always been outgoing I dont think Ive had a shy
moment in my life. I like being with people.
Her parents were born in Halifax, and have relatives
in Prince Edward Island and New Brunswick, so most
summer vacations were spent in the East, visiting with
her extended family. That familial connection, regardless
of location or even blood relation, quickly became a big
part of Jillians character and served her well during her
darkest moments, when serious illness challenged her
ever-chipper spirit.
THE PINEAU FAMILY MOVED TO ST. ALBERT

when Jillian was 11 years old, about to begin Grade 6.
While a major change, it was no surprise that Jillian,
outgoing and athletic as ever, and her brothers transitioned
seamlessly into their new social environment. For the first
year, things went well. Jillian was more comfortable in
school, loving literature more each day until another
family trip, this time to Canmore, changed everything.
I had been really tired for a couple weeks, Jillian
PHOTO: COURTESY JILLIAN PINEAU
says. I love skiing, but that weekend I was so tired I wasnt able to ski
at all. When we got home, I was very pale, and my parents thought I had
mono (mononucleosis). Her family doctor thought the same until she sent
Jillian for blood work. The results came back and her mother answered the
late-night call that parents dread. My mom woke me up at 3 a.m., saying
we needed to get to the hospital. At that point, my mom knew that they
thought I had cancer but she just woke me up and said I need to get more
testing. So we left immediately because my platelets were so low that if I
bumped my arm, I could have started bleeding internally. We went straight
to the Stollery.
In the emergency room, a doctor asked Jillian what she knew. After
repeating what her mom had told her that she needed more testing
he said while that was true, he was almost positive that she had acute
lymphoblastic leukemia or ALL. Her mom stayed with her while her dad
went home to tell her brothers, and doctors performed the final, conclusive
test the next morning, which confirmed the diagnosis.
At that time Jillian turned to her parents, trying to absorb the shock.
When the doctor left the room I asked my parents, What did he just say?
Did he really just say what I think he said? Throughout her battle, Jillians
positive attitude remained resolute. To be honest, I dont remember crying
about it, not when it was happening, she says. Now, after I have these
moments of time where Ive recovered, and I look back, then I cry. But at the
time, even when I went through a small depression, I didnt get so upset that
I cried. Maybe from pain, but I never cried about me, myself, having cancer.
Doctors began work immediately. Treatment rounds came in stages
of varying intensity some she could do at home, while others required
a hospital stay and none of which she tolerated very well. Nausea,
dehydration and more than 20 pounds of weight loss meant Jillian would
spend more time at the Stollery than most in her condition. She woke one
night with extreme pain in her knees. An MRI revealed that steroids had
affected her bones, deteriorating them to the point where shell need knee
replacements by the time shes 30. She missed Grade 8 entirely, which is
when her depression started.
Maintaining the positive attitude that served Jillian so well had, itself,
become a burden. The constant support from family, friends and doctors
made her feel like she couldnt be upset, even when she wanted to. Her
slow, lengthy recovery was beginning to take an emotional toll. I got into
a bit of a funk and kind of shut down, she remembers. There was a part
where I got quiet. I didnt want to talk to people. It was not so much
anger, but I just had the feeling of, I dont want to always be positive. I
needed my time to be upset. Some time to sulk.
Medication helped, as did the upbeat attitude of the Stollery staff. But it
was the Teen Room where patients meet and talk, play games and watch
television that kept the darkness at bay. Its where she developed two of
the most important relationships of her recovery, and her life. I met Jessica
just as I was coming out of my depression, and Alora, a bit later, Jillian
says. As often as her St. Albert friends visited her in the hospital, the bond
was simply different with fellow patients, especially Jessica. We were able
to just talk, and not really think about our treatment. Ill always remember
sitting in my hospital bed with her, as she would do my nails. It was crucial
to relate with someone of the same age, going through something similar.
We could just be girls and be friends.
Tragically, Alora passed away last year, just a month after her wedding,
and Jessica died when Jillian was in Grade 9 and still going through
treatment. The cancer in Jessicas leg had spread to her lungs. Her family
loved Maui, so they took her for one last trip, and she got really sick while
LONG JOURNEY: A young Jillian poses with her Journey Beads,

which are representative of the multitude of procedures and
treatments she received at the Stollery.
she was there. On the flight back, her lung collapsed, and when they were
back, she passed away at home, Pineau says. It was the only time I cried
during treatment. Painful as it was, Jillian feels lucky to have spent time
with such wonderful people and finds happiness in knowing theyre no
longer suffering. To this day, all of the Pineaus feel a close connection with
Jessicas mother and her family.
AFTER TWO-AND-A-HALF YEARS OF CHEMOTHERAPY,

radiation treatment and Stollery visits, Jillian recovered, ready to start
her high school years uninterrupted by disease. She rekindled friendships,
began new ones and had plenty of Shakespeare to read. At 19, she met
20-year-old Blake through a mutual friend. They began dating before
she went to Red Deer for college, where he joined her in her first year
away from home. In step with her earliest maternal instincts, and partially
sparked by her time at the Stollery surrounded by kids, shes now about to
complete the Early Learning and Child Care program at MacEwan University
in Edmonton. Just like when my brother was born and I wanted to mother
him, I always knew that I wanted to be a preschool teacher, Jillian says.
Last August the Pineaus took another trip to the East, celebrating Jillians
fifth year of being cancer-free, and Blake met her family. In March 2015, he
proposed. They look forward to a life together, only a few years removed
from the cancer that almost snuffed hers out. When I think about it now,
it seems like something bigger than I could have accomplished, and I feel
proud, she says. I look back at the Stollery as a positive place, even
though its where I went through something so horrible. Its because of
the people who are there, the environment, and my family and friends.
31
milestone
EPIC
Engagement
BY Martin Dover
ATCOs employee-led fundraising program

is making a difference in the community
2006/07 TOTAL
$43,309.73
2007/08 TOTAL
$47,807.88
2008/09 TOTAL
$138,501.78
DOLLARS
RAISED
PER YEAR
In less than a decade, the
ATCO EPIC program has
contributed more than
$1.026 million to the Stollery
Childrens Hospital Foundation
through its seven divisions:
32
ATCO ELECTRIC
ATCO ENERGY
SOLUTIONS
ATCO GAS
ATCO I-TEK
ATCO PIPELINES
ATCO POWER
ATCO STRUCTURES &

LOGISTICS
2009/10 TOTAL
$58,980.11
2010/11 TOTAL
$83,375.20
2011/12 TOTAL
$124,184.80
2012/13 TOTAL
$157,127.83
2013/14 TOTAL
$163,446.34
2014/15 TOTAL
$209,476.42
GRAND TOTAL
$1,026,210.09
VER THE PAST NINE YEARS, THE STOLLERY
Childrens Hospital Foundation has received significant

support for its key foundation initiatives through the
ATCO EPIC (Employees Participating in Communities)
program, led and supported by ATCO and its people.
ATCO, one of Albertas longest serving companies, has been
supporting communities for more than 100 years. In 2006, it
launched ATCO EPIC, to bring together the companys fundraising
efforts under a single banner and make a more meaningful impact
in the community. ATCO enhances its employees generosity by
matching donations made to human health and wellness charities,
covering all administration costs and ensuring that the charities
benefit from 100 per cent of the donation. Since the program began,
the Stollery Childrens Hospital Foundation has received a total
of $1.026 million through ATCO EPIC events, volunteerism and
employee donations.
We are very proud of the fact that these individuals at ATCO care
so much about our organization that they want to help us see our
mission through, but also that ATCO gives them that opportunity
to do so and matches their donations, doubling the impact of their
employees generosity, says Lori Finck, senior development officer
with the Foundation. To us, its a pure example of how companies
can help make a difference in their communities, while having fun,
building a great corporate brand, and also building wonderful employee retention and engagement opportunities.
Every year, ATCO employees establish committees to plan and
implement engaging fundraising events in support of a feature
charity they select within each ATCO company. The biggest
difference between this and other corporate donation campaigns is
allowing employees to donate to the charities that mean the most
to them. In 2011, ATCO Power employees in Edmonton chose the
Stollery Childrens Hospital Foundation as their feature charity. As
a result, all of the funds raised from events ranging from auctions
to bake sales, held during the companys fall fundraising campaign
benefitted the Foundation.
Last year, ATCO Pipelines also selected the Foundation as
PHOTOS: COURTESY ATCO
beneficiary of funds raised through the companys golf tournament.

In total, $31,318 was donated through this event, and when
combined with annual employee donations and the ATCO match
made through the ATCO EPIC fundraising campaigns, the total
exceeded $200,000.
In addition to funds raised through events, feature charities
also benefit from increased awareness of their mission among
ATCO employees, resulting in increased individual employee
donations made through the course of the year and subsequent
years to follow.
An important part of our relationship with the ATCO EPIC program, is making sure ATCO employees know how their donations
are making a difference at the Foundation, says Lori. We are so fortunate to have them be a part of the Stollery family and look forward
to continuing our partnership in the future.
In 2014, ATCO employees raised a record $4.3 million for
community charities around the world. Collectively, since the
programs inception, ATCO EPIC has raised more than $28 million
for more than 500 charities, while also facilitating hundreds of
thousands of employee volunteer hours. The ATCO EPIC program
was recently awarded the Association of Fundraising Professionals
2014 International Award for Outstanding Corporation for the
companys many extraordinary contributions to philanthropy and
to the charitable sector.
Money raised through ATCO EPIC goes a long way to funding
priority needs at the Stollery Childrens Hospital, including
influential research via the Women and Childrens Health Research
Institute (WCHRI). Learn more about Dr. Lawrence Richers
research through WCHRI on page 24.
#THEDONORDIFFERENCE: When you include the

hashtag in your Twitter or Instagram posts about
donors like ATCO, TheDonorDifference.ca will
re-post them for all to read and enjoy. For more
information visit TheDonorDifference.ca
Give our kids every

chance to get better.
PUT YOUR MONEY

WHERE THE
MIRACLES ARE.
JENNIFER LOPEZ
ACTRESS, MUSICIAN,
TV PERSONALITY, MOM
Like all moms, Im always concerned about my childrens well-being. But sometimes they get sick. Sometimes they get hurt. Thats why Im so grateful we
have childrens hospitals. If any child needs a miracle, theyll do everything in their power to make one happen. Please join me in giving sick and injured
children every chance to get better. Put Your Money Where the Miracles Are. Give to your Childrens Miracle Network member hospital.
Childrens Miracle Network raises funds and awareness for 170 member hospitals, 14 of which are in Canada. Donations stay local to fund critical treatments and healthcare
services, pediatric medical equipment and research. Its various fundraising partners and programs support the nonprofits mission to save and improve the lives of as many
children as possible. Find out why childrens hospitals need community support, identify your member hospital and learn how you can Put Your Money Where the Miracles Are,
at childrensmiraclenetwork.ca and facebook.com/CMNHospitals.
Give Today
ChildrensMiracleNetwork.ca
to The Stollery Childrens Hospital Foundation
corporate HERO
POWER
to the People
BY Jacqueline Louie
Edmonton Valve & Fitting has raised $500K for the Stollery
Childrens Hospital Foundation in the past 15 years
EITH JOHNS AND HIS TEAM AT EDMONTON VALVE & have an impact on wanting to make a difference later in life, Keith says.
Fitting Inc. are corporate heroes with big, big hearts. Since Today, he adds, Its so comforting to know that if children need some
2000, theyve raised more than $500,000 for the Stollery Chil- unique medical attention, that right here in Edmonton we have a redrens Hospital Foundation through their annual golf tourna- nowned childrens hospital.
ment at the Edmonton Petroleum Golf and Country Club.
Edmonton Valve & Fitting has hosted its annual golf fundraising
According to Keith, Edmonton Valve & Fittings president, the real event for the past decade and a half to benefit the Stollery Childrens
story isnt about Edmonton Valve & Fitting its about all the people Hospital Foundation. The event is in collaboration with suppliers,
who dedicate their time, effort and money to support this and the other customers, and representatives from Swagelok the product brand
charitable events that the company gets behind.
that Edmonton Valve & Fitting represents.
We have been rewarded in so many ways by our association with
Staff do all of the organization and administration for the tournathe Stollery Childrens Hospital Foundation. It really is a relation- ment, which takes place each June with more than 140 golfers parship that is very special and gives us an opportunity to engage with ticipating and supported by approximately 40 volunteers. This years
so many people who want to support this wonderful, wonderful or- event will take place on June 24.
ganization, Keith says. All of this
Its a unique event in that it
would not have happened withhas
taken on a life of its own,
Its so comforting to know that
out the support of so many people
Keith
says. Our customers come
if children need some unique
working together both inside and
because they want to support
medical attention, that right here
outside our organization, stepping
the Stollery Childrens Hospital
in
Edmonton we have a renowned
up to make it happen.
Foundation.
A supplier of fluid system comA number of Edmonton Valve
childrens hospital, says corporate
ponents used in the oil and gas,
&
Fitting
customers will hold their
donor Keith Johns.
petrochemical and power indusown fundraising events before the
tries, the companys relationship with the Stollery Childrens Hospital golf tournament takes place, and then bring in the money they raise
Foundation began in 2000, when Keith and his team were looking for in their own organization as a donation during the golf tournament.
an opportunity to get more involved in philanthropic efforts. As he puts Some of Edmonton Valve & Fitting associates also take on special
it: We wanted to hold an event that allowed us to do something special fundraising initiatives of their own, in addition to the event.
for the community. It just seemed like the right thing to do. A lot of that
One of Keiths favourite stories is about an associate who, as part
stems from the Alberta way of doing business: Alberta has a culture of of his leadership development, decided to bring the team together to
those that can, help others.
hold a fundraising car wash at Edmonton Valve & Fittings headquarEdmonton Valve & Fitting chose to support the Stollery Childrens ters. Everyone pitched in: associates, their children, family members
Hospital Foundation because its an organization that resonated with and friends. Organizers emailed everyone they knew, asking them to
everyone on staff. And for Keith, its also personal. When he was growing come out and support the event and they also put up signs.
up, his family had to drive five hours from northern Ontario to Toronto,
They were so successful at getting the word out that there were cars
once a month for a year-and-a-half, so that his sister could get the medical lined up a block away. The idea of the car wash was pretty cool,
care she needed for her eyes. It is amazing how childhood memories can Keith says. What we didnt realize, was how busy we were going to
34
PHOTOS: COURTESY OF EDMONTON VALVE & FITTING
FORE A GOOD CAUSE: One of the major fundraisers Keith Johns,

shown second from right and below, holds for the Foundation is a
company and customer golf tournament every June.
be. We washed all the cars by hand, from the rims and the rinse, to
detailing the inside. At the end of the car wash we were laying on the
ground we had no idea what we were getting ourselves into, but to
see the fulfillment on the faces of the volunteers as we rallied and took
a picture with the cheque for the Stollery Childrens Hospital Foundation, made it all so complete.
The four-hour car wash raised nearly $10,000 for the Stollery Childrens Hospital Foundation. On top of the funds raised during the
actual event, an additional $600 came in leading up to the car wash,
brought in by Edmonton Valve & Fitting customers who werent able
to make it to the car wash, but still wanted to contribute. That says a
lot about our customers and the community, Keith says. Those were
individuals taking money out of their own pocket and on their own
time to donate to the Foundation. Edmonton Valve & Fitting also
supports the Foundations annual Tee Up For Tots Golf Invitational
and annual Snowflake Gala.
Its so easy to support this organization, Keith says. They strive
for excellence and that includes having the best doctors, the best
research, discovering new treatments and advancing clinical care; they
have available the newest, most specialized equipment, while at the
same time enhancing patients and families experience of going to
the hospital. The fact that all this is happening right here in Edmonton is a pretty awesome story.
The Stollery Childrens Hospital and the Stollery Childrens Hospital Foundation have been able to touch many lives across Alberta and
throughout Western Canada. Foundations like this one rely heavily
on community donors, and corporations in particular are very powerful supporters, notes Foundation president and CEO Mike House.
Corporate support is important, not only for the funds we receive,
but also for the connectivity to the community, he says. That connectivity to the community ultimately translates back to parents, children and families who rely on the Stollery Childrens Hospital for the
best care possible.
What Keith and Edmonton Valve & Fitting have done, is a reflection of the leader and his family, and their passion for making sure
our community has a great childrens hospital to rely on it if you need

it, Mike says. Keith demonstrates that, by marrying his business interests and care for his clients, with the care he has for children. They
are such generous people. They want to make the world a better place,
and that makes it special.
IN GOOD COMPANY: If your company would

like to organize an event to benefit the
Stollery Childrens Hospital Foundation, visit
stollerykids.com to learn how.
35
volunteer HERO
BY Christy Nich
Grin and Bear It

PHOTO: COURTESY STOLLERY CHILDRENS HOSPITAL FOUNDATION
The man behind Dr. PatchUp finds laughter

to be the best medicine for children
WHO CAN PUT A NUMBER ON THE PATIENTS

that Dr. PatchUp has come into contact with in the community, if only for a moment or two? Hes a favourite of
young and old at every Stollery Childrens Hospital Foundation event that he attends. The answer to anyone who
has imagined that their own teddy bear could come to life,
the man behind the giant teddy bear is no less fantastic.
Thomas McIntyre has been happily donning the mascot costume since the summer of 2013, making the Dr.
PatchUp character his own. He answered the call to be
a very friendly bear with a very busy schedule, with
the guarantee of a fun
They have a few moments to way to be imaginative,
just be a kid and basically feel outgoing and energetic,
a great excuse for
that theres a big teddy bear and
clowning around.
that loves them.
I went for a meeting, and they let me try
it out, says Thomas. It went well, so I stayed as the
mascot. At 28, he doesnt have his own children yet, but
he says its his dream for the future. In the meantime, he
looks forward to bringing a smile to young faces, to help
them forget the unfair hardships they may have to face.
Many of the children in the community dont understand
why their friends are at the Stollery, but they know their
friends are cared for with the same compassion that they
36
see from Dr. PatchUp when they meet him.

Being a mascot is a way to give back to the kids, and
give them a chance to brush aside all of their medical
issues. They have a few moments to just be a kid and
basically feel that theres a big teddy bear that loves
them, says Thomas. You can see how happy they are.
Its like their teddy bear is coming alive, so I have a dance
routine for them and everything, he adds. He cites this
years Snowflake Gala as one of his best times as mascot,
especially when the kids joined him in Dora the Explorers
party dance.
Hes a volunteer who goes the extra mile, according to
Shelley Borowski, volunteer co-ordinator at the Stollery
Childrens Hospital Foundation. Thomas actually put together a playlist of different kids songs hes got YMCA ,
he has rap songs and there are a few other kids songs
thrown in there. Kids are drawn to him, to Dr. PatchUp,
she says, adding thats in large part due to Thomass love
and care for the youngsters, and how he makes the character come alive with his contagious enthusiasm.
Shelley also cites Snowflake Gala as one of her favourite moments to watch Dr. PatchUp in action. She recalls
him getting down on his knees to be with the kids, giving
hugs and high fives, and dancing with them. Even with
so much going on at the annual family-centred event, the
little people seem to gravitate to Dr. PatchUp, like bees
to honey. I think people just feel the magic, she says.
Another memorable event was last years volunteer
appreciation party, Gala in Blue Jeans, where three types
of dance lessons were offered salsa, Bollywood and
Ukrainian. He was hilarious, on the floor mixing it up with
the kids. All the kids wanted to dance by him, Shelley says,
describing how he performed a male Ukrainian dance step,
resting on his paws and kicking his feet out. He got so into
it. I think they felt that energy, too.
Every chance he gets, Thomas brings Dr. PatchUp to life
through the magic, excitement and the interaction with
the youngest members of the Stollery community. Shelley
believes that is the stuff of the best mascots. Hes real;
hes a real teddy bear in their eyes.
She says the Foundation is lucky to have this caring volunteer who, when not sporting his cuddly persona, works
at the University of Alberta pursuing research into MRI
methods. Thomas has his masters degree in biomedical
engineering and hopes to volunteer overseas in the medical
field, because, Not everyone has access to our world-class
hospitals and research facilities, he says.
BY Lyndsie Bourgon
HOSPITAL portrait
Like Mother, Like Daughter

PHOTO: ANTHONY HOULE
A Stollery NICU social worker comes by her interest in the helping professions honestly
AMANDA SCHROEDER HAS BEEN INFLUENCED BY THE HEALTH

care environment throughout her life, as both her mom and aunt are
respiratory therapists. And although she was unsure what career path she
would eventually take, she always knew that she was drawn to what she
calls the helping professions.
Amanda is now a social worker in the neonatal intensive care unit
(NICU) at the Stollery Childrens Hospital. After high school, she found
herself captivated by the University of Albertas psychology and sociology
courses, and a friend recommended later that she look into the University
of Calgarys social work program at the Edmonton campus. I learned the
field was really diverse and that a career in social work could take many
different paths, she says.
Amanda set out to work casual shifts at the Stollery Childrens Hospital
and the University of Alberta Hospital. While she hadnt done any of her
practicum work at a hospital, she was drawn to the hospital environment
because of its multi-disciplinary work. As soon as I started providing
coverage at the Stollery, I just really fell in love with the teams and the
work that they do, she says. She took a six-month placement in pediatric
cardiology, which, really confirmed for me that I love working with
children and families. The NICU position came up in October 2007, and Ive
been here since then.
Her mother Dallas Schroeder who works in adult critical care at the
University of Alberta Hospital says Amanda has always had a caring

nature. She is an older sister to a much younger brother, and she helped
look after him, she says. She was an only child for nearly eight years and
sometimes when youre an only child you grow up a little faster. She was
young when she committed herself to this career, and shes conscientious
and cares about people.
No two days look alike for Amanda; every day, she aims to connect
with her current patients and new families that have come in overnight.
Every family that visits the NICU sees Amanda or her colleague, and they
do a social work assessment of their psycho-social situation, that helps
determine how to best help a family in their time of need. After that initial
assessment we provide ongoing support to the families here, connecting
with families at the bedside and providing day-to-day-support.
That support includes the antenatal consultation program which supports
a family after their baby has been diagnosed with a surgical condition before
its been born. It can be overwhelming, and they are coming to terms with
the fact that the delivery and what comes afterwards isnt going to be what
they imagined, says Amanda. Her assessments take into consideration a
familys needs and she gives them information ahead of time and helps them
with relocation plans if the family lives outside of the Edmonton area. She
also helps run a weekly informal parent coffee hour, with parent volunteers
and a hospital chaplain, for families in the NICU and pediatric intensive care
units. The main goal is to foster peer-to-peer support and connect families
with each other, she says. When one family meets another, they can often
relate in a unique way and gain support from each other.
And through the hospital, Amanda has thrived on the multi-disciplinary
experience she was so drawn to. She is a part of the NICU Family Advisory
Care Team (FACT) committee, a group of physicians, staff and Stollery
families that work together to improve the neonatal intensive care unit
experience.
Its almost a given that Amandas job is challenging. She is often faced
with ethical dilemmas, like when families have beliefs or values that are
very different from her own. But Im here to support them despite that. I
have to put my own values and judgments aside and ensure their voice is
heard among the team. She keeps herself healthy and active outside of
work too: she runs a popular cooking and baking blog, participates in Boys
and Girls Clubs Big Brothers Big Sisters (BGCBigs) programs and spends
time with her golden lab, Bella.
She started her career young, so she was in her early 20s and dealing
with very difficult situations, says Dallas. Its hard and emotional work,
but Amanda says the positive aspects of it are worth it. One of the biggest
things Ive learned over the years is how resilient human beings are, the
strength of the babies and families that I work with is amazing, Amanda
says, acknowledging those families are the ones that keep me going.
When they bring their babies back to us in a few months, or a couple years,
and we get to see the evidence of the good work we do, it makes this a very
rewarding place to work.
37
THE LAST word
BY Lily Pinchuk
A Special
Thank You Letter
ILLUSTRATION: LILY PINCHUK
HI. IM LILY AND IM 10 YEARS OLD. YOU

could say that Im lucky. I have two brothers and one sister.
My big brother Jack is three years older than me.
From as far back as I
Apparently, there are only a can remember Jacks
and eyes had a
few hundred people in the skin
yellow tinge. Mom and
world who have Jacks rare Dad were always taking
genetic liver disorder. Jack to appointments at
the Stollery Childrens
Hospital. Sometimes, I tag along. Not only does Child
Life make everything more fun, but Jacks doctors and
medical team at the Stollery are always nice. They are
always explaining Jacks condition to me. I like knowing
what is going on.
Apparently, there are only a few hundred people in the
world who have Jacks rare genetic liver disorder. Mom
says that because she and Dad are carriers for the disorder,
there was a good chance that one of us kids would have it.
38
Until last year, Jack always slept under special lights to

help stop his skin and eyes from turning yellow. Now, he
doesnt need to worry about the lights because my Uncle
Dave saved my brothers life. The doctors found out that
my moms brother was a perfect match. They took a piece
of Uncle Daves liver and put it in Jack. It only took three
weeks for Jack to feel good enough to go home. It usually
takes five to eight weeks for that to happen. Mom says
its remarkable. Its a big deal.
Last summer, Uncle Dave and Jack liked walking
around without shirts. They said its because theyre
proud of their scars.
Jacks life has changed forever. No more glowing lights
at night.
My brothers and sister are really thankful to the hard
workers at the Stollery. After all, they fixed Jack.
Its a good thing we have confidence in the Stollery. Now,
when I go to bed under the huge glowing lights, I know that
my medical team will do its best to fix me one day too.
Thank you
volunteers!
The Stollery Childrens Hospital Foundation would like to thank
all of our amazing volunteers for their hard work, time and
dedication in helping children and families in our community.
Thank you to our participants, volunteers, salons, donors and sponsors!

On behalf of Hair Massacure founders, the MacDonald family, our supporting charities and the thousands
of kids with life threatening illnesses, thank you for helping us raise more than $1.2 million for:
CORPORATE PARTNERS
CORPORATE SUPPORTERS
MEDIA SPONSORS
www.hairmassacure.com

Heroes Spring 2015

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STORIES FROM THE STOLLERY CHILDRENS HOSPITAL FOUNDATION SPRING 2015

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

Thank you to Steve Serdachny and the

For more information, visit: www.familydayclassic.com

contents SPRING 2015

A pediatric neurologist helps ease

37 LIKE MOTHER, LIKE DAUGHTER

A message from the president and

20 FROM THE HEART

30 STOLLERY SUCCESS STORY

Home monitoring is now

38 THE LAST WORD

SPRING 2015 VOL 3 No. 2

VENTURE PUBLISHING INC.

HEROES is published for the Stollery Childrens Hospital Foundation by

BY Mike House, MBA, CFRE

SHEER DELIGHT: Stollery kids Lexie Prunkl and

WHEN I THINK OF COMMUNITY, I THINK OF

PHOTO: COURTESY MELINDA ELGOT

PHOTO: COURTESY MELINDA ELGOT

A Heart as Big as Everest

PHOTO: NICKI WOHLAND

PHOTO: NICKI WOHLAND

NAOMI ELGOT LOVED CAMP EVEREST. THE CAMP,

So in 2014, John Paul I Catholic School kicked off its annual

PHOTO: COURTESY DIANNE ROBINSON

PHOTO: COURTESY LEIGHTON LARSON

Parker Bergeson: Fundraising Champion

PHOTO: STEPHEN WREAKES

Robin are local celebrities on the annual Corus Radiothon fundraiser

NEXT TIME: Catch Parker at next

PHOTO: COURTESY THE FLEMING FAMILY

PHOTO: COURTESY WENDY LARSON

PHOTOS: COURTESY MERRIOTT YOUTH ATHLETIC FOUNDATION

THE COLOUR PURPLE: If you have been to the Stollery lately,

Save the Date

DIRTY BIRDS CHARITY HOCKEY TOURNAMENT

The Stollery Childrens Hospital Foundation is honoured to have

MYAF ZOMBIE ADVENTURE RACE

JULIANNAS PLANT SALE

DQ MIRACLE TREAT DAY

DATE: May 23-24, 2015

DATE: August 13, 2015

A variety of four-inch bedding plants, herbs and tomatoes will be available

STAND UP FOR LOVE BENEFIT CONCERT

Home monitoring is now possible to check for blood pressure problems

WHEN PEDIATRIC NEPHROLOGIST DR. ABDULLAH ALABBAS SEES CHILDREN

obesity. The risk for developing hypertension is three times

Our donors make a monumental

From left to right, Stollery

HE STOLLERY CHILDRENS HOSPITAL IS THE ONLY

specialized pediatric health care facility in central and northern

PHOTOS: COURTESY THE GAGNON FAMILY

A rare autoimmune disease proves no match for a philanthropic

THE WHEEL DEAL: Over its four years, Stephies Bike

OU COULD SAY STEPHIES RARE AUTOIMMUNE

BEST BUDS: Foundation mascot Dr. PatchUp and Stephie

OCCURRING IN ABOUT TWO OR THREE CHILDREN PER MILLION,

NOW 11 YEARS OLD, STEPHIE IS IN REMISSION FROM JDM.

ON THE PULSE: (Clockwise from top) Pediatric

The Stollerys cardiology outreach program takes its expertise to

PHOTOS: NICKI WOHLAND

OU CANT TELL SHE HAS A CONDITION,

says Ian Butler of his two-and-a-half-year-old