Running header: THE REAL PROBLEM 1

The Real Problem

Olivia Stattine

Edina High School

THE REAL PROBLEM 2

The Real Problem

Many parents are frightened over the reality that their child might have a disability. On

January 22, 2010, Nella Hampton was born. Nella is a beautiful, one-of-a-kind baby girl, who

was diagnosed with Down syndrome. Kelle Hampton, the mother of Nella described that date as

the hardest, yet most amazing day of her life. As the doctor's words confirmed Nella had Down

syndrome, tears poured down Kelles cheeks as she held the hour-old baby. It was unclear to

what the future would hold for Kelle and Nella, and the fact of the unknown scared Kelle. Ever

since that day her life has been willed with unconditional love for her daughter, Nella

(Embracing Nella, 2010, n.p.). There are thousands of similar stories to Kelle Hampton's. It is

a tragedy that society may look upon Nella, and thousands of others with Down syndrome, as a

problem. The problem concerning Down syndrome is a result of the false accusation that Down

syndrome itself is a problem. Three society-created issues that relate to that overlying problem

are the fear of the unknown, high medical costs, and increasing number of Down syndrome

related abortions; but solutions can be found through social awareness, permanent medical fixes

or government support, and laws preventing abortions due to Down syndrome.

Background Information

Down syndrome, also known as Downs syndrome, is a genetic disorder. The average

35-year-old womans chance for having a baby with Down syndrome is 1 out of every 1,000

babies born. The chance increases as a woman gets older. At age 40 the predictability of having

a child with Down syndrome increases to 1 in 100, and as a woman ages the probability could be

1 in 30. There are three forms of Down syndrome, the most common being Trisomy 21.
THE REAL PROBLEM 3

Ordinary people have two copies of chromosome 21, but a person with Trisomy Down syndrome

would have three copies of chromosome 21 in each of their cells. The second form is Mosaic

Down syndrome. Mosaic is a rare form in which only some cells would contain three copies of

chromosome 21, instead of two copies in each cell. The third form is Translocation Down

syndrome, which is the only inherited form. Translocation Down syndrome occurs when the

third copy of chromosome detaches itself from one cell and reattaches to another. Trisomy Down

syndrome being the most common, is the most severe form. Compared to Trisomy, the forms of

Mosaic and Translocation have less symptoms that separate them from being normal. Many

with Down syndrome will eventually be able to independently live their lives after being

provided the necessary amount of care (Down syndrome, 2010, n.p.). The effects of Down

syndrome vary on the form one may have. The most common health effects include increased

risk to infections, respiratory complications, heart defects, and impeded digestive tracks. Also, it

is highly probable that an adult with Down syndrome will suffer from Alzheimers disease, and

children with Down syndrome are likely to be diagnosed with leukemia cancer. With modern

day medications, the life expectancy for one with Down syndrome is about 55 years old

(Costello, 2000, p.12).

Issues In Society

The first issue in our society is the fear of the unknown. In an article written by Gary

Rotstein, Down syndrome was described as a serious form of mental retardation. CARE 21, an

alliance between children with Down syndrome and their parents, made a point to educate Gary

Rotstein about his appalling way to describe a person with this disability. They made sure to

inform Mr. Rotstein and many others about how one with Down syndrome could be described
THE REAL PROBLEM 4

(Ortman, 2004, n.p.). It is obvious that Gary Rotstein is not knowledgeable on the topic of Down

syndrome, and rather he potentially wrote that statement out of the uncertainty of how one with

Down syndrome may act in society. The idea that one with Down syndrome has a severe form of

mental instability is very untrue. In fact, studies have concluded that the IQ range of people with

Down syndrome is generally much higher than most other people with different disabilities, and

children with Down syndrome are definitely educable (Wallace, 2004, n.p.). Secondly, the

annual medical cost of a child with Down syndrome varies on the child, but can be very costly.

The day-to-day things that consume parents and guardians [of children with Down syndrome]

such as hours of therapy, doctor check-ups, financial stresses, and the ongoing anxiety that

comes with it all, can create a fear that no matter how much they love their child, that may not

ever be enough (Cottle, 2012, n.p.). It is a sad thought to think that a mother of a child with

Down syndrome, such as Kelle Hampton, who loves her daughter so much, may feel like she

will never do enough for her child due to the high everyday cost. Many may feel there is no way

to avoid that feeling, which contributes to the third issue: Down syndrome related abortions.

New technology has come out with non-invasive testing, that best predicts the outcome of your

child. Unfortunately, this may lead to the increase of more abortions, out of parents fear of what

their future may hold by having a child with Down syndrome (Skotko, 2011, n.p.). In addition to

that fact, Heather Bellegia-Ernst, a mother living with a child who has Down syndrome,

indicated that "with nine out of 10 babies with Down syndrome being aborted, extinction is what

we are really talking about." (Lewin, 2015, p.1). The underlying issues in our society lead up to

the most heartbreaking fact, that someday people with Down syndrome may not be around.
THE REAL PROBLEM 5

Solutions

Initially, solutions could be medically advanced by new research which could potentially

find a cure. This research could help remove the third chromosome by physical therapy. The

Research for Down Syndrome organization has asked for funding to be able to perform this

research to help finally cure this disease. The funding would help researchers understand ways to

safely and effectively find cures. (Grants to Fund Down Syndrome Cognitive Research, 2012,

n.p). In addition, a study shows that 27% of parents would not use the cure, because they feel

that the extra chromosome makes their child who they are. In controversy to that point, Down

syndrome is a disease that can cause pain and suffering. The University of Washington has

pronounced their success in removing a replica chromosome 21, but as Dr. David Russell stated,

"We are certainly not proposing that the method would lead to a treatment for Down's Syndrome.

What we are looking at is the possibility that medical scientists could create cell therapies for

some of the blood-forming disorders that can accompany Down's Syndrome." (Lawson, 2012,

p.14). Medically, solutions may be found in the sense of removing hurt or pain, but they are not

available or wanted by all. Governmental and social solutions shall be found to suit all needs and

wants of people with Down syndrome and their families. One governmental solution was the

proposition of the Achieving a Better Life Experience Act (ABLE). ABLE was put in place to

allow disabled people to open tax-free bank accounts for necessities such as education, medical

care, and housing. The president of the National Down Syndrome Society, Sara Hart Weir stated,

"This bill will change the way that families can save for their children and adults with Down

syndrome and will ease the unnecessary burdens that are placed on families -- all while allowing
THE REAL PROBLEM 6

people with Down syndrome to work and save for the future." (Yen, 2014, n.p.). The ABLE act

would not only help people with Down syndrome to reach their potential, but also decrease some

parents fear of not being able to effectively raise their child. Also, an Ohio originated bill

suggests that abortion will be banned if due to avoiding having a baby with Down syndrome.

This has been created a legislative priority because Down syndrome is easily distinguishable

during pregnancies, and could have many traces leading up to abortion. Mike Gonidakis, the

president of Ohio Right to Life stated that no one is perfect, and everyone should have a right to

life (Lewin, 2015, a.1). This bill is a small part of what could take away the idea that Down

syndrome related abortions could lead to the extinction of people with Down syndrome,

especially due to increased technology of prenatal testing. Usha Nayar perfectly stated how

solutions can be found socially, We need a change in peoples perspective of special needs. It is

not sympathy that individuals need but acceptance as members of society. (Shipway, 2008). The

Buddy Walk was created by the National Down syndrome society to emphasize all the

possibilities people living with Down syndrome are able to accomplish. The one-mile Buddy

Walk takes place in various areas across the United States during National Down syndrome

awareness month (Coleman, 2006, p.1). Janelle Moeller annually attends the walk with her

family because she believes that majority of the public is scared of what they dont know. She

stated, "The buddy walk is a big deal for us because it raises awareness to the public about

children with special needs showing that they can contribute to society and are more like us than

you think. (Rimington, 2008, n.p.). The Buddy Walk is part of a greater solution to eliminate

the fear of the unknown. Raising awareness can put a damper on the issues of misleading

definitions all due to the little knowledge society has about people with Down syndrome.
THE REAL PROBLEM 7

Conclusion

By finding solutions to eliminate the issues in our society, a significant amount of people

will understand that Down syndrome itself is not an issue, rather the untold truth about the

disorder is covered-up by the high medical costs, creating fear in the eyes of many, and then

leading to issues that could potentially cause the extinction of Down syndrome people. As the

average person, finding solutions medically may not be a possibility, but small steps such as

walking in the Buddy Walk, contacting a local congressman, or even educating a friend is just as

important. Every action towards improving the lives of millions with Down syndrome and their

families is significant. Someday, there is hope that no mother will ever be frightened by the

realization that their child might have Down syndrome.