My name is Heather Curtis. My husband Chuck and I have an almost 6-year-old daughter Makenna and a 13 month old son Brody. Brody was born on May 24, 2011 with a very rare, serious, and life threatening skin condition called Recessive Dystrophic Epidermolysis Bullosa, or RDEB. When he was born he was missing skin on his hands, his right leg from about mid shin down, and his left leg from the thigh down. He is missing a protein called Collagen 7 that holds his top two layers of skin together. To put it simple, any type of friction against his skin causes painful blisters or causes it to fall off altogether. Many people born with EB die within their first 2 years of life. Brody must live every day wrapped in bandages to help prevent future wounds as well as protect the ones that he has from serious infections that could ultimately kill him. We have to change these bandages every other night. This process can last anywhere from 2 to 3 hours and is very painful for Brody. There is no cure at this time. Doctors are working very hard to find one. The only treatments are to do the bandage changes and also a bone marrow transplant. The BMT is very early in its stages, has only a 50% survival rate, and is very evasive.
We are asking for your help because all of the things that come along with having a disease like this are very expensive. His bandage materials range from $3,000-$6,000 per month and whatever insurance doesn’t cover we have to. He takes many medications each month. We have just found out about a new topical ointment that helps make RDEB patient’s skin stronger and replenish some of the missing Collagen 7 protein. This ointment is very expensive, $30 or more per tube about the size of Neosporin. We have only tried it for about a week and found out that Brody goes through 1 tube per change and we change him 3 times per week. Before insurance will cover his bandage materials (in network) we have to pay $3,000 and before they will cover this new ointment (out of network) we have to pay $4,500. We also have to make many trips to an EB Center about 3 hrs away from us, which adds many extra expenses when you factor in hotel stays and food.
Brody can’t stand on his own yet, he has never crawled, I’m guessing he will be almost 2 if not older before he is able to walk. There is a good chance that because skin breakdown on the bottoms of his feet could get really bad from walking, that he will have to rely on a wheelchair for mobility. All I want is to give my son every opportunity to lead a long and as normal as life as possible and I feel very strongly that this new collagen 7 ointment will help him to do this. Please help us any way that you can.