Have you ever heard of childhood dementia before?
If you didn’t know it was actually a thing, you wouldn’t be alone. Sadly, this condition affects a lot more children than you might think.
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When Haidyn went from being a seemingly healthy little girl to losing her voice and mobility, it was really hard for mom Carrier Folwer to deal with.
“It is really hard to look at how much she’s changed…”
Carrie is now sharing her story about her 7-year-old daughter’s condition so that others will become more aware and help in the fight for a cure.
Even though Haidyn is in pain and gets very little sleep, she still smiles, laughs, and enjoys life…or at least tries to.
On their TikTok channel, Carrie says that she can count on one hand how many times she’s heard her daughter laugh in the pst three weeks.
It “seems like a bad dream” that at 7, her daughter is not the same girl that she used to be.
@haidynshopeI hate you Sanfilippo Syndrome.♬ original sound – rhianne
Back in March of 2020, Haidyn was diagnosed with a condition known as Sanfilippo Syndrome, a rare genetic disorder that leads to serious problems in the brain and nervous system. It’s genetically inherited by both sets of parents.
Carrie and her partner were told by doctors that there was no cure, but even worse was the news that there was no treatment for the condition.
Sadly, and I mean this is seriously tragic, Haidyn’s condition is 100% terminal. They were told to “just take her home and love her.”
The best way to describe this neurodegenerative disorder is childhood dementia or childhood Alzheimers.
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Sanfilippo Syndrome attacks the brain in the same manner that Alzheimer’s does. However, as Carrie goes on to explain, “it’s more than just dementia.”
Unlike Alzheimer’s, it also attacks the nervous system, which quickly deteriorates the entire body.
“So anything you think can go wrong within your body can happen with Sanfilippo Syndrome.”
By the age of 6, Haidyn lost all of her speech capabilities.
Previous videos show the little girl saying “I love you,” a phrase that Carrier never hears her utter anymore.
As Haidyn’s condition continued to deteriorate, Carrie and her husband talked about how they couldn’t just sit there and watch their little girl fade away. So they decided to do something about it.
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The couple shared their story online to help raise awareness and to help find (and fund) a possible cure.
“Mainly we know at this point that what we do by advocating in our community, and on social media, that yes, Haidyn is who we are doing it in honor of.”
Sadly, it may be too late for Haidyn, but Carrie and her husband are still fighting for a cure so that other parents and kids in the future won’t have to go through the same heartbreak they’ve experienced.
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Watch the video below to learn more about Haidyn’s story.
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