A FAMILY’S HEART

Charlie Knuth
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By Amanda Lauer, Freelance Journalist/Health & Wellness Advocate
At the age of seven, Charlie Knuth has endured more than most adults will ever face in their entire lives. He was born with epidermolysis bullosa (EB), an inherited connective tissue disease. As soon as doctors handled him after birth his body began to blister. He was transferred from the small hospital where he was delivered in southern Wisconsin to Children’s Hospital in Milwaukee. His birth parents abandoned him there. This is where Trisha Knuth and her husband Kevin stepped in. “We did foster care for children with special medical needs,” said Knuth. “We were called by Children’s Hospital that a baby was just born and had a severe condition where their skin fell off and most likely would die in the first year. They wanted to know if we would be interested in taking this baby home with car and driving to Milwaukee and I got to meet us. The next day I was in my Charlie for the first time. He was two weeks old.” The Knuths have three older “from the very beginning, children, twins Alex and Charlie was able to himself ” Hunter, who are now 18, and daughter Chloe, 10. When Charlie was added to the brood, life got even busier for this Darboy mom. “To try to imagine what a newborn baby with this disease goes through is almost impossible,” said Knuth. “He had to have Lanacane on his mouth in order to suck a bottle because the skin on his tongue and the roof of his mouth was falling off and blistering. His throat would blister and he would choke on the fluid from the blisters. He’d have trouble breathing because they were blocking his airway. Every time he kicked or moved his feet like a normal baby would, he would rub the skin off his entire body. Every single toe and finger had to be separated and wrapped individually with these thick bulky bandages. It took probably three hours a day to bandage him. He was on morphine, the whole works.”

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 that’s 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, that’s 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 don’t 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, he’s been able to reach the milestones most other children conquer. “I don’t 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

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A FAMILY’S HEART

Charlie Knuth continued
blister but his skin was not falling off like it had been previously. But because he had the stem cell transplant, he was much more capable of infection because of his immune status, so now we once again were trying to stay ahead of infections without overloading him with antibiotics,” recalled Knuth. In June of 2012 Charlie came down with a virus that knocked out his entire immune system and he had to undergo a second stem cell transplant on July 15, 2012. “Incredibly it took and he’s 100 percent engrafted but this time the recovery has been much harder, much longer, much different than the first.” The stem cell transplants have been lifealtering for Charlie but another thing was added to his daily regimen starting February 17, 2013, which has increased his quality of life. On that day the Knuth family had an Enagic water ionizer set up in their home. The water ionizer creates strong acidic water, strong alkaline water and Kangen drinking water which is anti-inflammatory, very alkaline, high in antioxidants, and microclustered for superior hydration. Knuth had been introduced to Kangen water a few weeks earlier and did her due diligence researching it before they got their machine. “There has to be some kind of clinical research for me to believe that claims are what they say they are. So what I did was I went onto medical web sites, Pub Med for instance, and I researched those. What I discovered is there were many citations on Pub Med that talked about how pH level on skin determines healing of wounds. What they found is that healed skin has an acidic environment and wounds that are infected are very high on the pH scale, they’re very alkaline. Then I went farther and looked and I saw that the pH of water, if it’s acidic (enough) can kill the MRSA virus on the surface of wounds and accelerate healing and so that compelled me to want to try the water.” The Enagic water ionizer makes several grades of water. “I gave Charlie (the Kangen) water to drink because the GI tract is

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. It’s more comfortable for him and also it’s 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 he’s dry, I’ll 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. “It’s 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, it’s almost like he plumped up instantly. His skin doesn’t 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-

For more information about Kangen Water go to www.kangenwisconsin.com
ments, the bath tub, his dressing change table. It kills 99.9% of bacteria on surfaces.” This year Charlie is in first grade and goes to school for two hours a day, four days a week. “He has his own private teacher. He also has his regular classroom and slowly but surely we will integrate him in there for some more school. He’s missed a ton of school since the beginning of his school career but we’re catching him up. He’s getting there. He’s a very smart boy.”

Despite all the obstacles they’ve had to overcome, Knuth feels extremely hopeful for Charlie’s future. “Just recently they were able to correct Charlie’s 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 they’re growing it in a lab and we’re 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. “I’d recommend that everybody drink Kangen water. Do your research and find out what’s in your regular drinking water so you can be educated.” SG

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