Teenager with rare, painful condition now calls Colorado home: 'Here, they don't stare'
A Longmont family is waiting and hoping for the FDA to approve a new drug that may help her daughter and others suffering from what has been called, "The worst disease you never heard of." Life is not easy for 14-year-old Rafi Kopelan.
Since birth she has suffered from a genetic disorder called EB for epidermolysis bullosa. It causes the skin to be very fragile and blister.
Rafi's body is covered in wounds that do not heal, that constantly itch and hurt. A video provided by the family is painful just to watch let alone feel.
"You know when you get a paper cut and you put Purell on it. It's like that on 60% of my body," said Rafi.
A cabinet is full of just some of the medicines used to treat her. Just the wound care supplies cost $100,000 a month. The family was living in New York where their insurance rates were raised 400%.
"So the insurance companies don't like you because they are paying out a lot more than you are paying in," Brett Kopelan, Rafi's father explained.
They found only eight states where Rafi's healthcare would be covered by Medicaid funds. Colorado topped their list. The father gushed.
"They cover all the bandages. They cover Children's Colorado, an incredible hospital that takes care of all of Rafi's needs."
To say it has worked out well is an understatement.
"In New York I was stared at everywhere I go. I got used to it kind of after a while, but here they don't stare. They look at me and smile," Rafi told CBS4's Rick Sallinger.
Her mother, Jackie Kopelan said, "We had to move away from our family and friends, but if we had to move any place we definitely picked the right place to move."
Rafi is able to do much of what so many Colorado children grow up enjoying even going on the ski hills. In the meantime, there's a new drug awaiting FDA approval that could heal the wounds from EB. It's something she prays for.
"Yes I really hope it gets approved. I have been waiting for years," she said. Rafi's father, Brett, is the executive director of DEBRA of America which he describes as the only national not for profit that provide all inclusive support to the EB community.
