Knuth improving, out of hospital

MINNEAPOLIS - Update: Charlie Knuth returned to the hospital on Saturday, February 19. He had a fever of 102.9 after dialysis. His mother Trisha writes in a blog post, she hopes Charlie will be out in 48 hours and he seems okay, just feverish. He has a sniffle and a raspy voice.

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Doctors for the Darboy 4-year-old who went to Minnesota for a potentially life-saving transplant say the procedure is working.

Charlie Knuth has been out of the hospital for about a week now.

FOX 11 traveled to Minneapolis to catch up with him at the Ronald McDonald House.

There, the child whose life was once measured by pain and bandages is breaking free - free to smile, to laugh, to hope.

"It's hard to describe because it literally happened in front of my eyes," Charlie's mother, Trisha Knuth, said.

Charlie has essentially been imprisoned by his own skin since birth, but that skin is changing.

We first introduced you to Charlie last October, when 95 percent of his body was covered with blisters and wounds. Now, just five percent has lesions.

He suffers from epidermolysis bullosa, a rare skin condition.

"Normally it took like five hours from beginning to end to do baths and dressing changes and all the things that go with it," Trisha Knuth explained.

EB worsens with age and for people with cases as severe as Charlie's it can be a death sentence. But Charlie appears to be getting better.

When we spoke with him, he told us he was excited to have his head bare for the first time since he was six months old.

"I can sleep on a pillow without my head wrapped," he said.

Charlie's family is also adjusting to a new routine.

"I can just be mom, instead of being the nurse and the doctor and the caretaker," Trisha Knuth said of her changing relationship with her son.

It's all because of a ground-breaking procedure doctors at the University of Minnesota have developed to treat children with EB.

"This is as close as somebody can get to not being able to live, and come back," Charlie's doctor, Jakub Tolar, said. "It's a very harsh medication to use; nevertheless, this is the only thing that these kids and other patients that I treat with leukemia or with other conditions - this is the only option that they have."

Tolar is talking about a bone marrow stem cell transplant. He performed the procedure on Charlie in late December and says it can improve skin and quality of life for EB patients - if they live through it.

"They can play with their friends, with their siblings," Tolar explained. "They can do what we would consider an outrageous thing for someone with EB, they can jump on a trampoline, they can ride a bike, things that are common to us, but are very rare and very uncommon for children with EB."

And it was that potential that that drove the Knuth family to seek the risky procedure at the University of Minnesota Amplatz Children's Hospital, the only place in the world with a treatment for EB.

You may recall they had to fight to get there.

Medicaid initially refused to cover Charlie's treatment, but relented when the community rallied in support.

The 4-year-old spent more than a month at the hospital, a place of hope for his family, but also of struggle.

Charlie was the 13th patient to receive the transplant. Four have died during or in preparation for the rigorous treatment.

Charlie also had his battles.

"This little guy got an infection in his central line and it got into his blood," Trisha Knuth said. "He went into respiratory failure and renal failure."

But three weeks later, Charlie was out of intensive care and his blisters began to slip away.

"I'm not pale anymore," Charlie announced proudly.

Fifty days post-transplant, he's a marvel at the Ronald McDonald House. Wounds that took weeks to heal need only a day.

Charlie and his mother know they're only halfway there, but are enjoying their lighter moments. Time once spent caring for wounds, they now use to play.

Charlie will spend at least two more months at the Ronald McDonald House. He also has dialysis four days a week at the hospital, where another little boy is preparing for the same procedure.

Preparing for his life to change.

"I told (the other child) how your skin got better and your face and all those things," Trisha Knuth said to Charlie. "His face lit up like you wouldn't believe and his mom was crying and his aunt and uncle and he started feeling his own face."

Researchers say it’s too early to know the long-term impact of the procedure. The first patient had the transplant just three years ago.

However, they do say results have been positive and there are a number of patients waiting for the procedure - children who look to Charlie for inspiration, as Charlie looks towards home.