Why is his skin falling off? That is a question you never expect to think about upon your child’s birth. However, when Jackson was born in October of 2007, we heard the doctor utter six words that would change our lives forever: “I think he has Epidermolysis Bullosa.”
Jackson had a routine heel prick and the nurse placed a band-aid on his heel. When the band-aid was removed the next day, all the skin on his tiny foot tore off with it.
Since that day, we have made it our mission to support the brilliant research focused on finding a cure for EB that will give Jackson, and others afflicted with EB, a chance at living pain-free lives.
Jackson has Recessive Dystrophic Epidermolysis Bullosa (RDEB), one of the most severe forms of EB. After that first hospital incident, EB continued to rear its ugly head. In the neonatal intensive care unit (NICU), Jackson’s skin began to tear and blister with increased frequency. His tongue blistered and his mouth bled when he drank from a bottle. The elastic in his diapers tore up his thighs. By the time we took Jackson home, his body was covered in bandages.
At the time of Jackson’s birth and currently, there are no FDA- approved treatments nor a cure for EB. The only way to “manage” the disease is to wrap Jackson’s body in non-adhesive dressings to try to reduce the chance of injury and infection.
In spite of this serious diagnosis, Jackson has thrived beyond doctors’ expectations. He is able to go to school, draw, and swim, though it is rare for him to make it through a day without sustaining a painful injury. His skin is scarred from repeated blistering and, all too often, pain and inflammation make it difficult for him to walk.
Yet, there is hope as tremendous progress has been made over the past decade. Jackson has participated in several clinical trials that appear to have had a positive impact on his wound healing and decreased his levels of pain and itch. Jackson and others who participate in early-stage clinical trials are the bravest warriors we know.
We are so grateful that EBRP continuously partners with the research community to stand at the forefront of science and ensure that Jackson can, one day soon, be free from the burden of EB.
- Alex and Jamie Silver, EBRP Co-Founders and Jackson's Parents