When people hear about Alzheimer's or dementia, they often think of elderly people who begin to lose their memory as they get older. Not often do people think of young children being affected by the illness. It so happens, however, that dementia can affect children in a very severe and detrimental way.
Haidyn Fowler is a 7-year-old who was diagnosed with Sanfilippo Syndrome, a neurodegenerative disease that is like Alzheimer's in children. The illness causes complete body shutdown, leaving children in a state of deterioration. In addition, it cuts down their lifespan drastically.
Haidyn was born with the illness, despite seeming to be relatively healthy.
When Haidyn was born, she entered the world with her umbilical cord wrapped around her neck and her lungs were underdeveloped. She also had jaundice and was placed in the NICU, on a ventilator, for seven days and was released after 10 days, mom Carrie Fowler explained on her blog, Grace in My Mess.
Throughout her early childhood, Haidyn has suffered from many medical issues.
Carrie shared that Haidyn has suffered from constant ear infections and upper respiratory infections, as well as Achilles’ tendon contractures. She's needed surgery several times and had GI issues such as constant diarrhea and vomiting.
She's had a very hard time with potty training as well. Her mom has shared that she is "still not potty trained" and most likely never will be.
In 2018, Haidyn was diagnosed with Autism Spectrum Disorder.
Haidyn's mother shared that around the time her daughter was diagnosed with autism, Haidyn's nervous system was totally failing. Her behaviors were becoming much harder to control.
In addition, there were deformities in her body, including in her shoulders and hips. Finally, in 2020, the family received Haidyn's true diagnosis of Sanfilippo syndrome.
Children with Sanfilippo tend to experience progressive dementia symptoms.
"Sanfilippo Syndrome will often cause these children to suffer from seizures. They will lose the ability to eat for themselves and many will get a feeding tube. They will lose the ability to walk and need a wheelchair. All because of Sanfilippo," Carrie wrote on her blog.
Haidyn is no longer able to speak and operates with the mentality of an 18-month-old.
Because of the progressive nature of her condition, Haidyn is now unable to speak and do many of the things other children her age can do. Eventually, she will lose all the skills she has gained in her short life. She also will likely suffer seizures and movement disorders.
She is not expected to live past her teen years, her family explained, according to the Cure Sanfilippo Foundation.
No FDA-approved treatment currently exists for the illness.
The Fowler family is actively fundraising and is committed to sharing their story in the hope that spreading awareness can help to work toward a cure. The family, along with their daughter, Braelynne, are raising money for the Cure Sanfilippo Foundation, which helps raise funds and awareness for clinical trials, treatments, and a possible cure.
Despite their daughter's diagnosis, the Fowler family works every day to just love a little bit harder.
“She’s taught me so much, but definitely that it’s the little things in life that we take for granted the most," Carrie Fowler 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."
