Most people think dementia is 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 disease.
In 2020, Haidyn Fowler was diagnosed with Sanfilippo syndrome, a genetic condition that deteriorates the whole body, 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 disease and, although seemingly 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 with the mental capacity to an 18 month old child. .
“The best way to describe [Sanfilippo syndrome] is that it’s called infantile dementia or infantile Alzheimer’s because it attacks the brain in much the same way as Alzheimer’s disease,” Haidyn’s mother Carrie told “Good Morning America.” “But it’s more than just dementia or Alzheimer’s, because not only does it attack the brain, it attacks the central nervous system and it damages the whole body.
“So anything you think can go wrong in your body can happen with Sanfilippo syndrome,” she added, admitting it’s hard to watch photos and videos of her daughter as she could still talk and walk unaided.
Despite this, Fowler said her daughter “smiles, laughs, loves and enjoys life” and inspired her, her husband, Caleb, and eldest daughter, Braelynne, to work to find a cure for this terrible disease. sickness.
There is currently no FDA-approved treatment or cure for Sanfilippo syndrome, and the Fowler family hosts fundraisers to support research.
“She taught me so much, but it’s definitely the little things in life that we take the most for granted,” Carrie told ‘GMA’. “We love much harder. And we fight every day to be truly happy for her even despite all the heartbreak we have to face too. We try to focus on being happy for her because she deserves it.
Fowler said they raise awareness about the disease by advocating in their community and on social media.
“Haidyn is the person in whose honor we do this, but we are mainly fighting for the children 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’m just…I’m proud of her, so I like to let other people be proud of her.”