Most people think of dementia as an illness that only affects the elderly, but one family is sharing the heartbreaking story of their daughter, who suffers from a childhood version of the debilitating condition.
In 2020, Haidyn Fowler was diagnosed with Sanfilippo syndrome, a genetic condition that causes the entire body to deteriorate, leading to seizures, movement disorders, immense pain and discomfort and, eventually, the loss of bodily functions.
The condition is terminal, with a life expectancy between 10 and 20 years.
Haidyn was born with the illness and, although seemingly healthy at birth, her body has slowly started deteriorating — leaving her in near-constant pain and unable to speak at only 7 years old, and with 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 because it attacks the brain almost identically to Alzheimer’s disease,” Haidyn’s mom, Carrie, told “Good Morning America.” “But it is more than just dementia or Alzheimer’s, because not only does it attack the brain, it attacks the central nervous system, and it deteriorates the entire body.
“So anything that you think can go wrong within your body can happen with Sanfilippo syndrome,” she added, admitting that it’s difficult to look back at photos and videos of her daughter when she could still talk and walk unassisted.
Despite that, Fowler said her daughter still “smiles, laughs, loves and enjoys life” and has inspired her and her husband, Caleb, and older daughter, Braelynne, to work to find a cure for the awful disease.
There is no FDA-approved treatment or cure for Sanfilippo syndrome at the moment, and the Fowler family holds fund-raisers to support further research.
“She’s taught me so much, but definitely that it’s the little things in life that we take for granted the most,” Carrie told “GMA.” “We love a lot harder. And we fight every day to be really happy for her even despite all the heartbreak that we have to deal with too. We try to focus on being happy for her because she deserves that.”
Fowler said they are raising awareness for the illness by advocating in their community and on social media.
“Haidyn is who we are doing it in honor of, but we’re mainly fighting for kids in the future so that there can be a cure,” she said.
“She fights so hard every day to keep going when most people would have given up long before, and I just … I’m proud of her, so I enjoy letting other people be proud of her.”