“She’s Fading Away,” a Girl, 9, Confronts Childhood Dementia, Her Mom Shares Their Journey

For many, dementia conjures images of forgetfulness and decline affecting the elderly. However, the Fowler family faces a heartbreaking reality — their daughter, Haidyn, battles a childhood form of this devastating illness. Diagnosed with Sanfilippo syndrome in 2020, at 5 years old, Haidyn’s life is a constant struggle against a progressive, terminal condition.

Haidyn’s story is a fight for every smile.

Sanfilippo syndrome, also known as mucopolysaccharidosis type III (MPS III), is a rare genetic disorder. It belongs to a group of conditions called lysosomal storage diseases (LSDs). In healthy individuals, lysosomes act as cellular recycling centers, breaking down complex molecules. However, Sanfilippo syndrome disrupts this process.

Children with Sanfilippo lack the necessary enzymes to break down specific sugar molecules called heparan sulfate. This leads to a buildup of these molecules within cells, causing progressive 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.

Despite the heartbreak, Carrie and family find strength in Haidyn’s resilience.

"Often times, it may seem easy for me to share our reality or to show how we have adapted to life with childhood dementia and knowing our child is fading away... Yet, I find myself riddled with fear and anxiety, drowning in anticipatory grief and the grief of what we’ve already lost when I see other parents in the Sanfilippo Syndrome community share their own journeys," Carrie wrote in one of her Instagram post.

Carrie describes the heartbreak of looking back at photos and videos of a younger Haidyn, full of life and mobility, "It's very hard to look at how much she's changed."

"She's taught me so much, but definitely that it's the little things in life that we take for granted the most," Carrie reflects. The family cherishes every moment and fights for a future where Sanfilippo syndrome no longer steals children's lives.

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."

Haidyn’s story serves as a powerful reminder of the strength of the human spirit and the unwavering love of a family. Another similar story happened to a mother who discovered a shocking truth after bringing her 7-year-old daughter to a routine eye check.