Most people think of dementia as a disease that only affects the elderly, but one family shares the heartbreaking story of their daughter, who suffers from a childhood version of the debilitating condition.
In 2020, Hayden Fowler was diagnosed with Sanfilippo Syndrome, a genetic condition that causes the entire body to deteriorate, leading to seizures, movement disturbances, severe pain and discomfort, and eventually the loss of bodily functions.
The condition is final, and life expectancy is between 10 and 20 years.
Hayden was born with the disease, and although she appeared healthy at birth, her body slowly began to deteriorate – leaving her in near-constant pain and unable to speak at just 7 years old, and the mental capacity of an 18-month-old. .
“The best way to describe [Sanfilippo syndrome] is that it’s referred to as childhood dementia or childhood Alzheimer’s disease because it attacks the brain almost identically to Alzheimer’s,” Carrie, Hayden’s mother, said, “Good morning America.” But it’s more than just dementia or Alzheimer’s, because it doesn’t just attack the brain, Rather, it attacks the central nervous system, deteriorating the whole body.
“So anything that you think can go wrong with your body can happen with Sanfilippo syndrome,” she added, acknowledging that it’s hard to look at photos and videos of her daughter when she can still talk and walk unaided.
Despite this, Fowler said her daughter still “smiles and laughs and loves and enjoys life” and inspired her and her husband Caleb and eldest daughter Braille to work on finding a cure for this terrible disease.
There is no FDA-approved treatment or treatment for Sanfilippo syndrome at this time, and the Fowler family is raising donations to support more research.
“She taught me a lot, but definitely the little things in life that we take for granted,” Carey told GMA. “We love so much more. And we struggle every day to be truly happy for her despite every heartbreak we have to deal with too. We try to focus on being happy for her because she deserves it.”
Fowler said they are raising awareness of the disease through advocacy in their community and on social media.
“It’s Hayden who we’re doing in honor of her, but we’re basically fighting for the kids in the future until there’s a cure,” she said.
“She fights so hard every day to keep going while most people have given up long before, and I just…I’m proud of her, so I enjoy letting others be proud of her.”