Niagara Falls teen fights rare skin condition with hope and humour

William Bergen-Barlow of Niagara Falls has a rare skin condition called epidermolysis bullosa and is fighting for his life. It’s inherited, has no known cure, and causes the skin to be fragile. This, coupled with other conditions that significantly affect his ability to breathe and eat on his own, means William accepts that his body could give out at any time.

But he’s home now. He says he attends school for half a day and treats each day like a gift. Ashley Bergen is William’s mom. She says it costs $17,000 a year to keep up with the devices, therapies, and medications that keep William alive. This is in addition to the funding they currently receive.

She says each day presents its own set of challenges, including William’s ability to receive nutrition, most of which is through a feeding tube.

It’s clear his sense of humor is his biggest strength. A family friend started a GoFundMe page to help with William’s medical costs. Ashley Bergen says doctors have told her there’s no way to determine how much time William has.

They say his combination of diagnoses is rare. While his health is declining rapidly, his mom is hopeful that the medication will keep him around long enough to fight it. As for William, he knows his body could fail him at any time but he says he won’t give up.