14-year-old John Hudson Dilgen was born with a genetic skin condition called epidermolysis bullosa, or EB.
EB is a set of rare skin diseases that causes a patient’s skin to blister in response to any minor contact from another person, from heat, or even from friction caused by scratching.
For John Hudson, his condition is caused by a lack of collagen, a protein in the top layer of his skin, called Type VII Collagen. Not only does his skin blister and shed, but his feet are also two severely different sizes. Constant blisters and open wounds cover 60 to 70% of his body. Most of his life has been spent wrapped up in bandages that are replaced each day.
The bandages help protect John Hudson’s delicate skin, as well as the areas of his body that are already wounded.
Each day, to prevent further infections from ravaging John Hudson’s body, he has to take a bath mixed with vinegar and Clorox to destroy any bacteria from attacking him. This liquid mixture is showered over his open wounds and the pain is unimaginable.
“It’s unbearable,” John Hudson admits. “There’s no word that describes how bad it is.”
Right now, John Hudson has to be brought to the basement of his family’s home to access the bathtub his family had installed several years prior. They’d hoped that this special bathtub would provide John Hudson with a little more relief during his daily cleanings – but it hasn’t.
The bath has actually made things worse, particularly over the past five years as John Hudson has gotten older and grown taller.
The skin on John Hudson’s feet are never able to fully heal because he uses them to walk, and now he’s also just a little too tall to sit on the chair lift to go up and down the stairs between the first floor and the bathroom without scraping his knees along the wall.
The Dilgen family has long since realized that their current arrangement will no longer be able to support John Hudson’s health. In hopes of finding a reaching a better arrangement for everyone in their family, they’ve reached out to friends who are contractors and architects to develop a new plan for their home – which includes a bath more suited to John Hudson’s needs.
This new tub is oxygenated, which means John Hudson will no longer have to take vinegar-Clorox baths that cause intense pain. Instead, he will be able to take softer baths that actually help his skin heal and protect his open wounds.
The tub and all the necessary home remodeling, however, costs about $40,000.
"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,” John’s mother, Faye Dilgen, explained. "We're trying to put the tub against the wall so the nurses can get to three sides of the tub, which right now they can't do."
The family put up a GoFundMe page, hoping that some kind strangers across the internet would donate and help their son. But they didn’t realize how quickly the campaign would latch on.
With the help of this touching video, the Dilgen’s fundraising campaign collected almost three times the $40,000 they initially requested.
The family is overwhelmed with the support they’ve been receiving and no one is looking more forward to the installation of the new tub more than John Hudson.
In spite of the young boy’s terrible situation though, he’s managed to remain positive and grateful throughout the past 14 years. Not a day goes by without him expressing his immense gratitude toward his parents who he says, “do everything.”
“I wouldn’t be getting better if it wasn’t for you,” he said tearfully.
Faye and her husband are, in turn, proud of their son for keeping such strength through 14 difficult years. They, too, are looking forward to having the new tub installed – and sending John Hudson to a new clinical treatment at Stanford University where doctors are hoping to improve his skin by putting small skin grafts across his wounds using gene therapy.
If you can, please consider donating to the Dilgen’s campaign here as well. Although they’ve already met their goal, John Hudson is hoping that the extra funds will support other kids who are also suffering from EB like him.
