Ashley Bergen says her 16-year old son first diagnosed shortly after birth
The Niagara Falls mother of a 16-year old boy with four rare health conditions is tirelessly trying to get more government funding for her son.
Ashley Bergen says her son William has Epidermylosis Bullosa, a skin condition, Myasthenia Gravis, which is an upper body weakness, Scolisis, which is curvature of the spin, an eating disorder that requires a tube.
She adds there is limited government support. "Because, apparently, he's not disabled enough to meet the qualifications. I think it comes from a lack of awareness, because nobody has seen a combination quite like this before, including hospital staff."
She says her friend set up a GoFundMe page because of the expenses the family endures, where you can also get a better description of what William endures.
She also says William was diagnosed almost after birth with the Epidermylosis Bullosa.
He weighs less than 100lbs, and spends a lot of time in the hospital. "Going to high school is a challenge, everything is a challenge... people make comments. He's gotten really good at explaining himself but it's really sad that at 16-years of age he even has to. And, even just adapting to school, he can't go a full day."
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