On 05-Feb-2017 In People & Politics
John Dilgen was born with no skin on his left wrist and feet. The 14-year-old from Staten Island, New York has an incurable disease which causes his skin to fall off even at the slightest touch.The little boy was diagnosed with epidermolysis bullosa (EB) which is a rare genetic disorder that causes the skin to burst and blister, leaving raw sores vulnerable to infections. Living most of his life wrapped in bandages, the child is prone to chronic infection, anemia and even early death because of this disease.Recommended for you: Girl Born With Bizarre Polka-Dot Skin Disease Will Melt Your Heart
He was diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a more grave form of the disorder. It is characterized by difficulty in eating and swallowing, loss in toenails and fingernails, failure to thrive and anemia.
EB is caused by missing type VII collagen, a protein that allows the top layer of the skin to bind with the bottom layers. This disease causes the skin to consistently and constantly to fall off even due to the modest of movements.
John's family has even started a GoFundMe so that they could buy an oxygenated tub which would help in making his baths less painful. Surprisingly and unexpectedly strangers came forward and donated three times i.e. over $108,361, of the original target of $40,000.
John's parents said that he has lost almost 60 to 70 percent of his skin and he can barely walk. Not only that, but blisters that are caused also affect the mouth, eyes, esophagus, and the internal organs.
The little soul has lived his entire life on pain medication. In cases of infection, his baths are filled with Clorox and vinegar. He will be flying soon to Stanford for a new clinical trial which will involve putting six small skin grafts with corrected DNA on his wounds
"John's bathroom is in the basement, it's hard to get to, he's outgrown it. There isn't enough room for the nurses to maneuver.'She also explained that as John's disease is progressing, his mobility is becoming worse.
The life expectancy of such sufferers is 40 years. As there is no cure for the disease, subsequently, John will be facing lifetime surgeries, hospitalizations, and infections.