Charlie Knuth making big strides while recovering from transplant in Minnesota
By: Caroline Rowland
Updated: August 9, 2012
MINNEAPOLIS, Minn. (WFRV)-- A few weeks back, Trisha Knuth had to see her son go to a place, no six-year-old should ever get to.
"Charlie thought he was going to die, as a 6-year-old," Trisha recalls, "I would be trying to comfort him and he would just say out of the blue, mama you're going to be so sad."
Sometimes it got so bad, Trisha herself wasn't so sure what was going to happen to Charlie, who suffers from Epidermolysis bullosa, an extremely rare and terminal skin disease.
"In the beginning I did (think he was going to die), I mean realistically how much can a person go through," said Trisha, "I wasn't going to give up on him, obviously there was no way, but I was preparing myself, going through the movements in my head, this is what's going to happen and I was preparing for the reality of that."
It was back in late May, early June that Trisha noticed Charlie had developed a cold, but, in just a matter of days his health was quickly deteriorating. She wasn't taking any chances, so she drove Charlie to his doctor in Minnesota and there they learned he had developed a post-transplant virus.
"He was all set to start school in the fall, everything was great then the virus came and wiped everything out, completely, so, back to absolutely no immune system again," said Trisha, "Charlie literally had no platelets, he had barely any iron in his blood, and he had no white count at all, everything was just gone, just gone."
Which meant all of the progress he had made from his first stem cell transplant, had been reversed. So his doctors decided he would have to undergo another stem cell transplant.
Charlie's first stem cell transplant was back in 2010 as a part of the clinical trial started by Dr. Jakub Tolar at the University of Minnesota Amplatz children's hospital.
Since 2007 they've performed 25 transplants on EB patients.
"The ultimate goal has always been to cure Epidermolysis bullosa," said Dr. Tolar, "we are closer than before for sure, I'm also very clear on the fact that we are not done, this is truly the beginning, or the end of the beginning if you will, because we have accomplished something but there is truly a long road to go."
On July 14 Charlie became the third EB patient to undergo his second stem cell transplant. The first two cases were not successful, one of the patients died, and the transplant didn't work on the other patient, who's cells could not be replaced.
But, early signs indicate the transplant is working for Charlie.
"A week ago we didn't really know if Charlie was going to respond to this, today we do have a very good idea that he is responding to it," said Dr. Tolar, " he's doing great, he's doing absolutely great."
"The last couple days have been extremely optimistic and important for all of us, the reason for that is his new cells are growing, he's got close to normal white blood cell count, which can only happen if you have a good reaction to his bone marrow transplant, his skin looks better, always a good sign, and we do not have any organ damage to speak of."
Once Charlie's white blood cell count is good enough he will be moved from the hospital to the Ronald McDonald house in Minneapolis. He will stay there for 100 days and after that hopefully make the journey back to Darboy.
"I have hope today, to believe that he is producing those cells in large numbers, and his skin is beautiful, to see him heal a little more each day, it's truly amazing," said Trisha.
But as with any terminal disease, they have learned to be cautiously optimistic about Charlie's recovery and take every challenge as it comes.
"It was minute by minute before, I mean his heart almost stopped, now it's literally hour by hour, maybe after today or tomorrow it will be day by day, it's hard to look into the future," said Trisha, "all I want for Charlie is him to be as pain free as he can be and him to have a life outside of this. He deserves to go to school, he deserves to have friends and go outside and play."
Tuesday, complete strangers threw a carnival, to help raise money for the Knuth's, and on Saturday, the Corner store in Darboy, which has been a long supporter of Charlie's, held a fundraiser.
It's that support that help's the Knuth's get through these extremely difficult times.
"If it wasn't for the people back home, this wouldn't have happened in the first place, now it's happening again, we wouldn't have a house if it wasn't for the people at home, we never would've been able to do this, I don't have words to describe how I feel about the people back home."
