The 'butterfly boy' has spent a life in bandages that protect his fragile skin

John Dilgen, from Staten Island, New York, was born with no skin on his feet or his left wrist.

The 14-year-old has an incurable disease that means his skin can fall off at the slightest touch.

John was diagnosed with epidermolyosis bullosa (EB), a rare genetic disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.

He has lived most of his life wrapped in bandages, and the disease will cause him to eventually succumb to anemia, chronic infection, and even early death.

John Dilgen, 14, from Staten Island, New York, was diagnosed with a rare genetic skin disorder called epidermolyosis bullosa (EB), which causes the skin to blister and burst

When John was born, a pediatric dermatologist quickly diagnosed his symptoms as EB. 

Sufferers of the disease are missing type VII collagen - a protein that allows the top layer of skin to bind with the bottom layers.

The slightest movement causes the skin to constantly and consistently fall off.

When John was 16 months old, he received an even more severe diagnosis of Recessive Dystrophic EB.

One of the more grave forms of the disorder, it is characterized by loss of fingernails and toenails, anemia, failure to thrive, and difficulty eating and swallowing.

Blisters also affect the eyes, mouth, esophagus, as well as the internal organs. 

According to his parents, John has lost between 60 percent and 70 percent of his skin. And his feet are covered in so many wounds that he can barely walk.

John has lived his entire life on pain medication and his baths are filled with vinegar and Clorox in case of infection.

Last week, his cousin, Joe Purdy, posted a YouTube video detailing John's everyday struggles with the disease.

John said, about his baths: 'It's unbearable. There's no word that describes how bad it is.'

The video was part of a campaign to get John a special oxygenated bathtub - meaning baths no longer will be as painful and his skin will heal faster.

His mother Faye told ABC 7 NY: '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.' 

On the GoFundMe page, Faye further explained that as her's son disease progressed over the last few years, his mobility had become worse, as had his pain, wounds, infections, and anemia.

The video was seen online and thousands stepped up to help.

The Dilgens received almost three times what was requested - over $108,361 from the original $40,000 goal.

A contractor and an architect are both working pro bono for the bathtub installation.

Since then, dozens of plumbers, electricians, and contractors with connections to lumbar, concrete, appliances and windows have contacted the family saying they are willing to donate their time to help them out.  

'Words cannot describe how thankful we are,' John said.

It is estimated that one in 50,000 people in the US have some form of EB. John currently faces a lifetime of surgeries, infections and hospitalization as there is no cure.

The life expectancy for kids like him is about 40 years.

John will soon be heading to Stanford University for a new clinical trial. The trial will consist of gene therapy that will put six small skin grafts with corrected DNA on his wounds. 

In the meantime, Faye will be running New York's Half Marathon with the women in her family to raise money for her son and awareness for EB.

'So look for us in our green shirts, you'll know us by our tutus, and we are calling ourselves "Sister Act",' she said.

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