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Charlie Knuth
u u u u u u u u
adapt
get around at first. He never had an issue with physical development at all. He could adapt himself to different ways of handling things. But thats not typical. One of the biggest issues Charlie faced was preventing and fighting infections. The more antibiotic ointment you put on anything the bigger issues you introduce, noted Knuth. He has had a continuing struggle with the MRSA virus. The other major concern was the fragility of his skin. His skin would come off like a glove. If you wanted to deglove a hand all you would have to do is hold his hand too tight and you could take the entire mold of his hand off, thats how bad it was. He was missing all the skin on his face except his eyes, his cheeks and his mouth. In December of 2010 Charlie underwent a successful stem cell transplant. After his stem cell transplant his skin became much stronger, meaning his skin would still Continued on pg 22
The severe EB that Charlie has is very rare, only a few hundred cases in the entire world. You dont realize how unbelievably complex the disease is until you have a child in your home living with this. As soon as he came home with us I knew there had to be better ways to handle his disease than what the doctors at the hospital had told me. The research started probably the first day he was home. Surprisingly, with as much pain as Charlie has endured in his life, hes been able to reach the milestones most other children conquer. I dont know why but Charlie from the very beginning was able to adapt himself. He was able to adapt the way he crawled depending on where things hurt. Instead of crawling on his knees he would do this sideways crab crawl on his feet to
A FAMILYS HEART
affected by EB as well and absorption was a big issue. The idea was to drink as much of this water along with his supplementation to get him to absorb the supplements and the calories that he needs. But far more important to EB is the topical use. Even though there are other ways that you can kill bacteria on skin, most of those ways are either extraordinary painful or they introduce more bacteria which is resistant. So, with that being said, I wanted to use it to kill bacteria without causing more bacteria or causing pain. The slightly acidic water produced by the machine is used for bath water for Charlie. Instead of having a high alkaline tap water bath, I would use that more neutral or acidic water. Its more comfortable for him and also its better for his skin. It was healing for his skin. I also add salt to make this acidic water like a saline bath which is far more comfortable for anybody with wounds. It takes the sting out. When he gets out of the bath, after hes dry, Ill take the strong acidic water and I will put that in a spray bottle and spray the wounds he does have with that water. It seems like it has a drying affect. The wound is not weepy and oozing like it normally would be. He has not had any skin infections since I started, said Knuth. Right away Knuth noticed a change in Charlie when they had access to the ionized water. Its hard for him to gain weight, he always had flaking skin, his color he was always very anemic from absorption issues. All his levels have been completely normal on blood tests since he started. His appearance has changed. He looked very dehydrated beforehand, its almost like he plumped up instantly. His skin doesnt flake as much and he looks much more hydrated. His pain has lessened tremendously. His pain from wounds has definitely lessened dramatically. Everything is better, she added. The biggest, noticeable difference is the smell. Previous to this there would always be the smell of staph no matter what you did it was always there, even if you changed the dressings every day. Also we use the acidic water to clean everything the instru-
Despite all the obstacles theyve had to overcome, Knuth feels extremely hopeful for Charlies future. Just recently they were able to correct Charlies DNA in the lab. His own cells are producing the collagen he was born without right now. They took a skin cell from Charlie and they grew it and went through his entire genome and found the mutation and corrected it. Now theyre growing it in a lab and were waiting for approval so they can give those back to Charlie. This will impact not just the EB community but many, many diseases in the world. Research on rare diseases can help more common diseases as well. Not everyone has the medical challenges in life that Charlie has, but Knuth has a suggestion for everyone. Id recommend that everybody drink Kangen water. Do your research and find out whats in your regular drinking water so you can be educated. SG