Wisc. boy in Minn. for potential life-saving treatment - KTTC Rochester, Austin, Mason City News, Weather and Sports

By Chris Conte

Wisc. boy in Minn. for potential life-saving treatment


MINNEAPOLIS (KTTC-DT) -- A 4-year-old Wisconsin boy battling a rare skin disorder that has left him with cuts and blisters on every inch of his body is now in Minnesota for a stem-cell transplant that could potentially save his life.

Epidermolysis bullosa is so rare only nine out of every 1 million people are diagnoses with it, essentially it means Charlie Knuth's skin doesn't hold together quite right, leaving him susceptible to countless infection and possibly skin cancer down the road.

"I can understand why people stare because it's a shock at first," says Charlie's mom Trisha.

Charlie's birth parents abandoned him at the hospital after he was born and just a few weeks later Trisha Knuth and her husband Kevin adopted the infant despite his scary prognosis.

"As of right now if there's any exposed skin he'll damage it by scratching it and it just tears open," Trisha notes.

Charlie's story has gained national attention after Wisconsin Medicaid announced they wouldn't cover treatment for a possible cure because it could cost over $1 million. Eventually, Wisconsin lawmakers stepped in and made sure Charlie could get the help he needed.

"I don't even need a cure, I just need it to be a little better I just need it to be that his life is worth living," Charlie's mom adds.

Doctors at Children's Hospital in Minneapolis will now give Charlie chemotherapy and eventually he'll have a stem cell transplant to hopefully reverse the disorder and although there's no guarantee it will work, 4-year-old Charlie says he's ready to fight.

"Charlie knows his hair will fall out, he knows he's going to get sick but he's very excited to do it all anyways," Trisha said about her son Tuesday at the Ronald McDonald House in Minneapolis where the family is currently staying.

Charlie's mom says his first chemotherapy treatment is scheduled for December 20th and his stem-cell transplant will hopefully take place at the end of the month.

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