Story of a Girl who Faced Childhood Dementia. She Is 9 Now and Her Mom’s Attitude Amazes

We used to think that dementia is an illness that only affects older people, but surprisingly, kids can also face this. Dementia is a condition where people have trouble remembering things, thinking clearly, and doing everyday tasks. Haidyn is a young girl who was diagnosed with a type of dementia called Sanfilippo syndrome in 2020 when she was 5 years old. Despite the challenges, Haidyn’s story is heartwarming because of her bravery and the love and support from her family.

Haidyn’s story is a fight for every smile.

Sanfilippo syndrome, also known as MPS III, is a rare genetic disorder. In healthy people, lysosomes are like recycling centers in cells that break down complex molecules. But in Sanfilippo syndrome, this process doesn’t work properly.

Children with Sanfilippo syndrome don’t have the enzymes needed to break down certain sugar molecules. Because of this, these molecules build up in cells, causing ongoing damage throughout the body.

Haidyn Fowler, at just seven years old, embodies the relentless spirit in the face of immense challenges. Despite being diagnosed with Sanfilippo syndrome, Haidyn continues to find joy in life.

“She smiles, laughs, loves, and enjoys life,” shares Carrie, Haidyn’s mother. However, the disease has taken a heavy toll. Haidyn suffers from constant pain, is unable to speak, and has the mental capacity of an 18-month-old.

They are still fighting for a cure.

Currently, there is no cure or FDA-approved treatment for Sanfilippo syndrome. The Fowler family, like countless others facing this disease, actively raises funds to support research efforts.

Their fight goes beyond Haidyn. Carrie emphasizes, “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 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.”

There are other kids who were diagnosed with dementia.

It is estimated that around 700,000 children around the world are living with childhood dementia. Despite the rarity of this condition, there are many stories of children and their families bravely fighting it. Unfortunately, the end is predictable.

Just like little Eddie, whose family shared a story. His mom recalled, “When the results came back, the doctor said, ‘I’m going to tell you something that’s going to completely change your world.’ Tests revealed that Eddie had Niemann Pick C, a rare and fatal genetic disorder that limits the body’s ability to process cholesterol and causes childhood dementia.”

But lately, after Eddie passed, she also mentioned, “He taught a lot of people to slow down, live the best life you can, live the best version of your life that you can, be brave and be happy. His legacy lives on.”

Such stories make us think about life in a totally other way, teach us to be grateful for what we have, and to understand that all people are unique. It is hard to know that someone has to face such kind of circumstances, but it also makes us believe in humanity.