At the age of seven, Charlie Knuth has endured more than most adults willever face in their entire lives. He was born with epidermolysis bullosa (EB),an inherited connective tissue disease. As soon as doctors handled him afterbirth his body began to blister. He was transferred from the small hospitalwhere he was delivered in southern Wisconsin to Children’s Hospital inMilwaukee. His birth parents abandoned him there.This is where Trisha Knuth and her husband Kevin stepped in. “We did fostercare for children with special medical needs,” said Knuth. “We were calledby Children’s Hospital that a baby was just born and had a severe condi-tion where their skin fell off and most likely would die in the first year. Theywanted to know if we would be interested in taking this baby home withus. The next day I was in my car and driving to Milwaukee and I got to meetCharlie for the first time. He was two weeks old.”The Knuths have three olderchildren, twins Alex andHunter, who are now 18, anddaughter Chloe, 10. When Charlie was added to the brood, life got evenbusier for this Darboy mom. “To try to imagine what a newborn baby withthis disease goes through is almost impossible,” said Knuth. “He had tohave Lanacane on his mouth in order to suck a bottle because the skin onhis tongue and the roof of his mouth was falling off and blistering. His throatwould blister and he would choke on the fluid from the blisters. He’d havetrouble breathing because they were blocking his airway. Every time hekicked or moved his feet like a normal baby would, he would rub the skin offhis entire body. Every single toe and finger had to be separated and wrappedindividually with these thick bulky bandages. It took probably three hours aday to bandage him. He was on morphine, the whole works.”The severe EB that Charlie has is very rare, only a few hundred cases in theentire world. “You don’t realize how unbelievably complex the disease is untilyou have a child in your home living with this. As soon as he came homewith us I knew there had to be better ways to handle his disease than whatthe doctors at the hospital had told me. The research started probably thefirst day he was home.”Surprisingly, with as much pain as Charlie has endured in his life, he’s beenable to reach the milestones most other children conquer. “I don’t know whybut Charlie from the very beginning was able to adapt himself. He was ableto adapt the way he crawled depending on where things hurt. Instead ofcrawling on his knees he would do this sideways crab crawl on his feet to
A FAMILY’S HEART
u u u u u u u u
By Amanda Lauer, Freelance Journalist/Health & Wellness Advocate
“from the very beginning,Charlie was able to
get around at first. He never had anissue with physical development atall. He could adapt himself to differentways of handling things. But that’snot typical.”One of the biggest issues Charliefaced was preventing and fightinginfections. “The more antibioticointment you put on anything thebigger issues you introduce,” notedKnuth. He has had a continuingstruggle with the MRSA virus. Theother major concern was the fragilityof his skin. “His skin would come offlike a glove. If you wanted to deglovea hand all you would have to do ishold his hand too tight and you couldtake the entire mold of his hand off,that’s how bad it was. He was miss-ing all the skin on his face except hiseyes, his cheeks and his mouth.”In December of 2010 Charlieunderwent a successful stem celltransplant. “After his stem celltransplant his skin became muchstronger, meaning his skin would still
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