Kyle Hicks will get a long-awaited bone marrow transplant. Hicks suffers from a rare and painful skin disorder called Recessive Dystrophic Epidermolysis Bullosa. The condition makes his skin fragile. Every day he must clean and cover the blisters on his skin in bandages.
Kyle is now 20-years-old. Eyewitness News first spoke with him back in 2008. At that time he was selected for a clinical trial for a new treatment for his illness. The cost was initially estimated to be at least $500,000. Insurance denied the procedure.
Fundraising efforts raised $378,000. As more children were treated, the cost of the transplant grew to more than a $1 million. As donations slowed, the cost increased, and the economy faltered, fundraising was put on hold.
After the publication of the clinical trials in the New England Journal of Medicine, the insurance company reconsidered its decision and approved Kyle for the transplant. Insurance and the funds donated to “COTA for Kyle” will cover the costs.
Kyle is scheduled to report to the University of Minnesota in Minneapolis on April 25 for testing. If everything goes as hoped, Kyle will undergo the transplant in May.
