These Young Children Under 10 All Have Dementia And Their Stories Deserve To Be Heard

About a third of all individuals aged 85 and older have some form of dementia, a group of disorders that occur during abnormal brain changes. Dementia affects everyone differently, but some of the most common symptoms include forgetfulness, difficulty speaking, trouble with memory, repeating questions, and a loss of balance. Certain diseases can cause dementia, like Alzheimer’s, Parkinson’s, or Huntington’s Disease. Stress and long-term high blood pressure can also cause dementia. Age is one of the strongest known risk factors for it, and only a small percentage of individuals below the age of 65 show symptoms, so it’s surprising to see the number of news reports coming out on children getting diagnosed with dementia. The families of these children share their stories in hopes of raising awareness to find a cure.  

Haidyn Fowler: The 7-Year-Old Girl Living with Terminal Dementia 

Haidyn was diagnosed with Sanfilippo Syndrome in 2020, a rare genetic condition that causes brain damage. It deteriorates the body, leading to pain, discomfort, and seizures. The current life expectancy for individuals with this disease is 10 to 20 years. “The best way to describe Sanfilippo syndrome is that it’s referred to as childhood dementia or childhood Alzheimer’s because it attacks the brain almost identically to Alzheimer’s disease,” Haidyn’s mother, Carrie, said.

The current life expectancy for individuals with this disease is 10 to 20 years. 

Haidyn is currently unable to speak and has a mental capacity of an 18-month-old. Though Haidyn struggles with her condition, she still enjoys life — she loves going on walks in the sunshine and spending time with her family. Haidyn’s beautiful spirit inspired her family to a start foundation to find a cure for Sanfilippo Syndrome, which you can find here.

Kayden Traynor: The 6-Year-Old with Batten’s Disease 

A Scottish boy named Kayden was reported to show similar symptoms as his 80-year-old uncle with dementia. He was always active and healthy until he started suffering from memory loss, seizures, poor eyesight, and a loss of mobility. Kayden was diagnosed with Batten’s Disease, a name for a group of 13 fatal disorders that greatly affect the body’s ability to remove cellular wastes. Kayden has forgotten to say “mummy,” and instead calls his mother by her first name and is confined to a wheelchair. Despite his setbacks, his parents remain hopeful and patient. 

Stanley Barnes: The 8-Year-Old with Alzheimer’s

Stanley was only 16 months old when he was diagnosed with Sanfilippo Syndrome (possibly caused by Alzheimer’s). Stanley is nonverbal and has a mental capacity of an 8-month-old. His parents shared his story to raise awareness of his illness. “He's quite dramatically gone downhill this year. It feels like you're losing part of him each day,” his mother said. In 2019, Stanley was on TV and walked nearly 10 miles (in the span of over a week) to help raise £5,000 for Children In Need, a charity by the BBC to assist disadvantaged children. Despite Stanley’s battle with his illness, his mother says he seems happy. 

Harley Bond: The 9-Year-Old Boy with Dementia Who Loves Festivals 

Harley was diagnosed with a rare type of dementia six years ago that affects his ability to walk, eat, and talk. Harley also has Sanfilippo Syndrome and is currently enrolled in a trial involving the infusion of fluids into his brain through a skull implant. Despite his illness, he’s continued to go to festivals with his family since the day he was born. “It’s our happy place and it’s Harley’s happy place. He’s always loved it from the first time he went,” said Harley’s father. “You never know when it’s going to be his last,” he continues, “He just loves it [festivals]. We thought the last one might have been his last, but he’s sort of plateaued and is in the same sort of space he was at the last festival, which is good for us.”

Closing Thoughts

Sanfilippo Syndrome is childhood dementia that’s known to be an inherited disorder. It’s a progressive, neuro-degenerative, metabolic disorder, and kids who have it do not have the necessary enzymes to break down a sugar known as heparan sulfate. Build-up then occurs, leading to toxicity in the brain and bodies of children. While this disease is considered rare, I believe it’s still important to raise awareness in hopes to increase the chances of finding a cure for these afflicted children and their strong families. 

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