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"“Jayden is a success story in that he is alive and has been infection free for some time now.”. ". -NFED

Shelly knew immediately that something was wrong with her third born son. Jayden had skin missing on many parts of his body. It looked as if those parts had been scraped across cement. The skin he did have was a shocking, bright red. She saw him for only a few seconds before the doctor and nurses whisked him away to be examined. They found a cleft palate, a fused eye lid, abnormal nails, and other physical abnormalities. They knew he had some kind of condition but they were not sure what it was. It was terrifying. Eleven hours later, Jayden was transferred to Children’s Hospital in Philadelphia where he was diagnosed him as being affected by Hay Wells syndrome, a rare kind of ectodermal dysplasia.

Shelly learned that Jayden’s raw and missing skin was called skin erosion. The threat of infection could prove fatal if not treated correctly. The news overwhelmed her. At one point during his first week of life, Jayden even stopped breathing. She was afraid to touch her new baby and his fragile skin for fear he would die. The family was lucky that Jayden was born at the right time and taken to the right doctor. Their doctor had treated a baby with the exact same problem just three months before. He also introduced her to the NFED, which helped her family and gave them accurate information on how to treat her son and his extremely rare condition. Jayden was the first child who benefited from a protocol the Foundation developed at an international research meeting on skin erosion. The information they received helped direct his treatment and ultimately save his life

Jayden is now a smart and playful three-year-old. He does not need any dressings and his skin is improving. Shelly’s daily routine is still consumed with his care. She must soak his dry eyes, clean out his nose, maintain his feeding tube, keep the skin on his feet and head well lubricated to prevent cracking and bleeding, and a list of other daily tasks. He longs to play in the back yard with his older brothers and she knows that someday he will. The Skin and Dental Dysfunction Foundation continues to provide her with information, and more importantly, support as she raises her son with this extremely rare disorder. Jayden is a success story in that he is alive and has been infection free for some time now.

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