When you hear the word ‘dementia,’ what immediately comes to mind?
Maybe you’re thinking forgetfulness and older people, right?
For this family of four, they were forced to confront this medical condition but it wasn’t an older member of their family. Their five-year-old daughter, Haidyn, was diagnosed with Sanfilippo Syndrome, a terminal, neurodegenerative rare disease.
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Sanfilippo Syndrome is similar to a mix of Alzheimer’s disease and dementia but in children.
“It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life,” the Cure San Filippo Foundation explained on their website.
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Children with this condition generally have a birth defect and cause a lack of a necessary enzymes in their bodies.
Because of this, there is no current cure for Sanfilippo Syndrome. Most of the children diagnosed die by the time they reach their teenage years.
Haidyn was born with Sanfilippo Syndrome and her body has slowly been deteriorating. She is now seven years old but unable to speak, walk, or eat. She is in constant pain and hardly sleeps.
She also has the mental capacity of an 18-month-old baby.
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And that’s not all.
“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,” Carrie Fowler, Haidyn’s mom, explained. “So anything that you think can go wrong within your body can happen with Sanfilippo syndrome.”
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It’s especially hard for the family to see Haidyn this way, especially since she was able to walk, talk, jump, eat and do everything a person could when she was younger.
It seems like a bad dream for Carrie, her husband, Caleb, and their older daughter, Braelynne, knowing that Haidyn can’t live the same way as them.
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But Haidyn continues to smile and laugh and enjoy her life and that gives Carrie and her family the push to keep going.
“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 Good Morning America. “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.”
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Carrie said they’re still adjusting to Haidyn’s diagnosis but they are doing their best to continue to love each other.
And they’re doing their best to make sure Haidyn lives a life full of great experiences and memories.
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Carrie and her family chose to share Haidyn’s story to help find a cure for this rare, terminal disease.
It may not be a cure for Haidyn but it can be a cure for a child in the future.
“We are mainly fighting for the kids in the future so that there can be a cure so that people don’t have to go through what we did as parents and their children don’t suffer like Haidyn,” Carrie shared.
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Learn more about Haidyn and her rare condition in the video below.
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