March 26, 2011
Nearly 100 days removed from a potentially life-saving stem cell transplant designed to strengthen his delicate skin, it’s almost time for Charlie Knuth, 5, to come home from Minneapolis.
“(April 8) is the last day that they’ll be taking samples of his skin to check and see how it’s different now than (when) we came in,” said Trisha Knuth, his mother. “After that, I believe we’ll get to go home.”
The Darboy resident has the rare genetic skin disease epidermolysis bullosa, better known as EB.
Since birth, his body has blistered incessantly, inside and out. Typically, the blistering leads to an aggressive form of skin cancer.
But a Dec. 30 bone marrow stem cell transplant has dramatically reduced Charlie’s blistering, which could ultimately reduce his cancer risk.
“His skin looks incredibly better,” said Dr. Jakub Tolar, Charlie’s physician at University of Minnesota Amplatz Children’s Hospital in Minneapolis. “Basically 90 to 95 percent of his body area was covered in sores. It’s less than 5 percent now.”
Charlie also has rebounded from a series of life-threatening complications he endured after the transplant, including infections, kidney failure and bleeding in his lungs.
“He pulled through all this very well,” Tolar said.
Charlie left the hospital in mid-February and moved into the Ronald McDonald House in Minneapolis, where his mother said he has thrived.
“He’s excellent,” she gushed. “For a while there he was really tired. Even though he was looking good and he was doing well, he still was very exhausted from the transplant.”
Charlie’s spirits were buoyed by unexpected birthday surprise from the Build-A-Bear Workshop at the Mall of America.
Store officials opened the sterilized workshop early on March 13, so the Knuths could celebrate Charlie’s fifth birthday in private.
“Somebody called anonymously to set it up and told them his story,” Trisha Knuth said. “Build-A-Bear took it from there.”
Charlie designed a camouflage-clad rabbit to match the macho-themed gifts he has already received from well-wishers back home.
“People are still sending stuff,” Trisha Knuth said. “People are doing things that are thoughtful, not necessarily just going out and spending money. They’re doing things that require imagination.”
One Fox Valley resident cobbled a collage from photos Trisha Knuth posted on her blog about Charlie’s experience in Minnesota.
And Cindy Riess, 52, of Green Bay, made 1,000 origami paper cranes for Charlie that she hopes to personally deliver soon.
“I’m a complete stranger, (but) I felt bad for him and wanted to do something,” Riess said. “I hope it helps. When I was doing them, I was always thinking about Charlie.”
The outpouring of support for Charlie hasn’t been limited to Wisconsinites.
“We get things from all over the world,” Trisha Knuth said. “People from overseas who have children with EB are following Charlie. He’s been an inspiration to other EB kids. It gives them hope.”
As remarkable as Charlie’s progress has been, Tolar stressed that Charlie still has hurdles to overcome because the December transplant wiped out his immune system, rendering Charlie “much more fragile than a newborn.”
It will take a full year for his system to redevelop, which means he will need to wear a mask in public and avoid children who have live vaccines, such as those for measles, mumps and chicken pox.
“From a practical standpoint, it’s a bad idea for him to go to a crowded mall,” Tolar said. “It’s absolutely fine for him to go outside, especially if it’s nice and there’s no high wind, and play without a mask. It would be a bad idea for him to go to preschool.”
While the process will get easier with time, Tolar said Charlie’s situation isn’t “worry-free” yet.
“Trisha knows this,” Tolar said. “His father (Kevin) knows this. And I think on one level Charlie knows this, too.”
To read Trisha Knuth’s blog, visit http://bit.ly/CharlieKnuthBlog.