Strangers raise $100K for medical equipment for boy, 14, with 'worst disease you've never heard of'


Thousands of strangers have raised more than $100,000 for this New York boy, who needs special equipment to treat his rare skin disease.

Read: Baby Born With 'Worst Disease You've Never Heard Of' Has Lost 60 Percent of His Skin

John Hudson Dilgen, 14, of Staten Island, was born with Epidermolysis Bullosa (EB), a rare genetic disorder some call the "worst disease you've never heard of." Because of the disease, John Hudson has open wounds internally and externally, including blisters covering his body, and even inside his eyes, mouth and esophagus.

"It's been more and more difficult over the years,'" his mom, Julie Dilgen, told "He is bandaged pretty much from head-to-toe. His mobility is significantly impaired and he's on pain medication as a result."

See more from John Hudson Dilgen's story:

Her son attended school regularly and graduated from the 8th grade last year, but has since turned to online classes to continue his studies from home.

"It's just been too much for him to get to school," Dilgen said.

When John Hudson was born without skin on his foot, his mom said doctors were able to tell her almost immediately what they were dealing with. There is no cure for the progressive disease, and treatment is limited to mae him more comfortable in his day-to-day life.

However, Dilgen explained that she found out about the Microsilk Tub from another mom of a child with EB, who compared it to a gentle Jacuzzi that uses microbubbles to clear the skin of debris. Dilgen said she hopes the technology will improve her son's skin healing process.

To raise money for the tub as well as a renovation of their home bathroom to make it more accessible, Dilgen turned to GoFundMe, hoping to raise $40,000 to cover about half of the process.

Barely a week after they set up the crowdfunding campaign, thousands of strangers has contributed more than $100,000 to support John Hudson's condition.

"It won't cure him of his EB but it will improve his quality of life," Dilgen said. "It's something at home that will help him in a tangible way."

Read: 2 Kids With Rare Disease Who Live 300 Miles Apart Finally Meet for Special Playdate

In addition to the funding of their tub, Dilgen said John Hudson will also begin partaking in clinical trials for his disease — an option that was never available to her son or people suffering from EB when he was born.

Dilgen and her friends are also preparing to race in the New York City Half Marathon in the spring, to raise awareness and money for EB research.

"I don't know how I'm going to run 13 miles in March, but I'm trying to do my part," the mom-of-three explained. "We finally have some hope on the horizon."

Watch: Meet the 5-Year-Old Boy Whose Rare Condition Causes Skin to Grow 10 Times Faster Than Normal