Born with Rare Skin Disorder, 14-Year-Old Boy From New York Living His Life Covered In Bandages

• comments
• 
• 

John Dilgen was born with no skin on his feet and his left wrist 14 years ago. He was diagnosed with epidermolysosis bullosa (EB), a rare genetic disorder wherein the skin blisters and bursts to the slightest of touch. Dilgen has lived all his life wrapped in bandages to prevent infections.

According to the Daily Mail, EB is an incurable disease in which people inflicted can eventually succumb to anemia, chronic infection, and even early death. John Dilgen, now 14-years old and residing in Stalen Island, New York, was quickly diagnosed by his pediatric dermatologist after he was born.

A previous report from Latino's Health, states that there is no cure EB and the treatment for this rare genetic disease only aims at preventing the blisters from becoming infected. That said, the sufferers of this rare disease is sometimes dubbed as "butterfly children" since they are sensitive to touch.

John Dilgen was further diagnosed with Recessive Dystrophic EB 16 months after his birth. Recessive Dystrophic EB is one of the graver forms of the disorder in which sufferers lose fingernails and toenails, development of anemia, fails to thrive, and and have difficulties in swallowing and eating.

According John Dilgen's parents, John has lost 60 to 70 percent of his skin while wounds due to the blisters cover the child's feet that he can barely walk. In addition to being on pain medication all his life, John is finding it difficult to take a bath. To prevent infection, his baths are filled with vinegar and Clorox.

Joe Purdy posted a YouTube video of his cousin John Dilgen to show what the boy is going through every day of his life. In the video, John describes his baths as "unbearable."

The YouTube video is a part of a fundraising campaign to provide John a special oxygenated bathtub to reduce the pain when John takes his baths. The family started a GoFundMe page as part of this fundraising campaign and the family received over US$ 108000, three times as much their original goal of US$ 40000.

A contractor and an architect offered their services for free to install the bathtub. Also, a number of plumbers, electricians, and contractors have pledged their time to help out the family. EB is caused by faulty genes inherited from one or both parents. Just one in every 50000 children in the US has EB.