At birth, Casey was diagnosed with epidermolysis bullosa (EB), a rare skin condition where due to a lack of collagen 7, the skin does not properly attach to the body. One in every 50,000 children has EB to a varying degree where light touch causes blisters. Children with the condition are sometimes referred to as “butterfly children” because their skin is as fragile as a butterfly’s wings.
Casey has had to make a lot of sacrifices in his life. When blisters formed in his throat, he had been put on a trach and D tube in the past. He could not attend school for many years. But there is one thing that Casey was adamant that he would do—get his driver’s license. He recently achieved the first step in that dream and got his permit.
Beth, Casey’s mom, said of the achievement, “Disease takes so much from these kids; we are just so overjoyed for him to make this dream a reality.”
Casey and his family have partnered with Angela’s House, a not-for-profit that helps provide services to families with medically frail children. Those services include socialization, access to medical equipment, and a network of support. Working together, Casey has gotten to the point where he can also successfully attend his local high school—William Floyd—where he is flourishing.
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