• Tweet
• Share
• Email
• Print

The family of a little boy is battling a crippling skin disease is reaching-out tonight. Trisha and Kevin (kah- nooth) Knuth want everyone to know about their son, four-year-old Charlie. His disease can be treated through a new medical procedure. But the family says The state's Medicaid program will not cover it.

Charlie asks his Mother; "why do we have to do this? Trisha Knuth gently tells him; "I know it stinks, doesn't it?" It's a daily routine for the two. As Charlie battles Epidermolysis Bullosa. The condition causes skin itching, blisters and infections. So, Charlie's family has to wrap him in fresh bandages to protect him. "Mommy doesn't like to do it, otherwise you'll get sick, right?" Trisha tells her son. 

Doctors say it can be fatal, or lead to skin cancer. But Charlie's family says researchers may have the answer. Bone marrow transplants have been successful but are expensive and cost around a million dollars. Charlie's parents want to give it a try. "They found four matches, fantastic matches for Charlie to have the stem cell transplant. We got home, and we got a letter from medicaid denying it."

The news stunned the family. "it makes me very angry because I feel like any other human being, if they knew and saw Charlie, they would want to do anything they could to help him." Trisha told us.

The department of health services did issue this statement: "An intervention must be of proven medical value. If there is no history of its non-experimental use, or supportive literature of such use, it would be denied as experimental."

The family is appealing to Medicaid while Charlie is hoping for relief.