John Hudson Dilgen Gets a New Tub
John Hudson Dilgen of Staten Island suffers from epidermolysis bullosa (EB), an extremely rare genetic condition. Children diagnosed with this disease are commonly known as “butterfly boys”, due to the way their skin sheds like that of a butterfly just prior to taking flight. EB causes painful ulcers all over their bodies that can burn and cut lips, eyes, fingers, legs lungs and hearts – as well as many other parts.
Despite his struggles, this teenager has managed to lead an independent and fulfilling life despite his disabilities – attending classes online and spending time with Dash watching movies together. Furthermore, his mission has become raising awareness for EB while motivating others in finding a cure.
But one element he’s been missing in his life is somewhere to call home – something which may finally happen this weekend.
John Hudson Dilgen is an 11-year-old Staten Island teen living with a rare skin disorder who was recently gifted a wheelchair accessible mortgage-free smart home designed specifically with him in mind by WABC’s Tunnel to Towers Foundation. This smart home will feature cutting edge technology to assist him as his condition causes his skin to blister and tear with even slight touch, according to WABC.
John, a middle school teacher, and Faye, a physical therapist, are tremendously grateful to the community for its love and support of their son. When they created a GoFundMe page to raise money for his tub, they never anticipated such overwhelming response – more than $100K came pouring in within just seven days – easily surpassing their goal!
Money raised will go toward funding a Microsilk tub, which uses oxygenated water to remove chemicals from John’s skin and protect him from burns and abrasions, while simultaneously decreasing how much bleach bleach he needs to bathe with. Furthermore, participation in clinical trials might enable John to find an answer for his condition.
On Saturday, those wanting to help this teen can join the EB Plunge event in Massachusetts – an international fundraising campaign with satellite events around the country including Staten Island as well as virtual campaigns online and via social media. Over time, thousands have taken the chilly plunge, raising over $7 Million and inspiring millions worldwide to take a stand against rare conditions for children like EB; with this year’s event expected to bring in even more.