It’s easy to take for granted simple pleasures such as a soothing bath after a long day’s work. Yet for one boy from New York State, a rare genetic condition makes bath time no simple matter and anything but pleasurable.
John Hudson Dilgen, of Staten Island, New York, suffers from “butterfly skin,” which makes physical contact, including bathing, nothing less than torture. However, his life was made considerably more bearable thanks to the generosity of a local charity.
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John was born with epidermolysis bullosa (EB), which prevents his skin from bonding with his body and causes it to tear and blister with the slightest touch.
Due to this skin condition, life has become “more and more difficult over the years” for John, his mom, Faye, told Inside Edition.
“He is bandaged pretty much from head-to-toe. His mobility is significantly impaired and he’s on pain medication as a result.”
“EB has definitely affected my whole life,” the 16-year-old told Barcroft TV. “I basically need help with everything. Any type of force or any friction to my skin causes a big wound.”
When Faye heard of Microsilk Tub, a special bathtub that could help in John’s healing process, she took to GoFundMe to raise money for the renovation to install the tub in their kitchen—their home was painfully ill-equipped to make John’s life at all safe or comfortable.
Soon, Stephen Siller Tunnel to Towers Foundation—a charity that started out helping families after the September 11th attacks—came to hear about the family’s situation and agreed to meet them at their home to discuss the much-needed renovations.
“They heard our story and how we were trying to renovate the home,” Faye Dilgen told New York Daily News. “They reached out to us. They said they would be happy to help out.”
Yet, the help they offered went far beyond just installing a new bathtub in the family’s kitchen; the act of charity took a dramatic and unexpected turn, as John explained:
“They took my mother outside and said, ‘We’re not going to do that for you because that tub is going to be in your new house that we’re going to build for you.’”
The new home would include not just the regular facilities of ordinary living but would be fully outfitted with handicapped-friendly smart technology to assist John, including an elevator, which would allow him to access all three levels, radiant heat in a specialized treatment room, plus a few new improvements for his parents and siblings.
This amazing boy with a rare skin condition gets a surprise that will change his life forever. http://bit.ly/2FXJK0S
Posted by Localish on Thursday, November 29, 2018
All of this would give John something that he had always wished for but had never been able to have: his independence.
“I’ve waited so long to be independent, and I can’t believe that I finally have a home that is not only accessible but has smart technology,” he told WABC.
“It’s awesome, it’s so nice I can move freely about my house, go upstairs to my room without needing any help or anybody asking ‘where are you going?’”
Thanks to this newfound freedom, John’s days have gained in profound ways.
“It gives a day more quality, it gives his space more freedom, and in doing that, he’s actually sleeping better, he feels better, he’s happier and all of that together adds up to something I can’t even—it’s not tangible,” Faye explained.
Yet, John is not planning on getting too used to his newfound comfort without giving something back to the world; since then, he has made efforts to raise awareness about EB and let others know how it has impacted his life.
It’s “more important than anything else” for others to know what it is like to live with butterfly skin, he told Barcroft TV.
“Even though I have this condition, I hope that someday I can grow up and be like my parents. I want to do something where I am helping other people,” he added.