Boy, 4, diagnosed with 'childhood dementia' as heartbroken mother speaks out
The young boy has something known as Sanfilippo Syndrome Type A
A heartbroken mom is desperately looking to give her four-year-old son a fighting chance at life following his devastating diagnosis.
In 2023, Tate, from Swansea, Wales, was diagnosed with autism, but his mom, Tammy McDaid, feared that there was 'something more'. From then on, Tammy pushed for answers for her son, and it wasn't until Tate had an MRI scan earlier this year that her fears were confirmed.
After numerous tests, it was found that Tate has Sanfilippo Syndrome Type A – a rare, genetic, and terminal condition often called 'childhood dementia'.
Children with the condition gradually lose all the skills they’ve learned, including their ability to walk, eat, and eventually even move independently.
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The condition is said to affect approximately one person in every 50,000 to 250,000 people, according to the Cleveland Clinic.
As to what causes Sanfilippo Syndrome, the health website further states: "Sanfilippo syndrome is a lysosomal storage disease (LSD). These are genetic conditions that cause a buildup of toxic substances in your body’s cells.
"People with LSD lack certain enzymes. Without functioning enzymes, your body can’t break down certain substances. If they build up in your body, it can be harmful."
Sadly, there is no cure for the genetic disorder, but Tammy is looking for possible treatment options for Tate abroad.
Discussing the long processes that it took Tate to get his diagnosis, Tammy shared: "At an autism assessment in 2023, they noticed the shape of Tate's head, and we were referred to Birmingham Women and Children's Hospital.
"At the beginning of 2024, he had a CT scan, and results came back stating there were abnormalities, and he was diagnosed at that point with something called craniosynostosis.
"With that, the person looking at the scan noted abnormalities in the brain. Tate then underwent an MRI in March 2024, and the results came back to say there were spaces in the brain, which is a sign of childhood dementia.
"When that happened, we went to do some metabolic and genetic testing, and then it has been a journey since then. It has been very much a yo-yo."
It wasn't until September that it was confirmed for sure that Tate had childhood dementia. The life expectancy for someone with Type A, like Tate, is just 11 to 19 years.
In the wake of the news, Tammy is now focusing her attention on finding possible treatment for Tate and has set up a GoFundMe page, which at the time of writing, has raised over £11,000.
She penned on the fundraiser: "There is currently no treatment or cure available in the UK, but I have a meeting soon with the Cure Sanfilippo Foundation to explore any possible treatment options abroad.
"These potential trials or therapies could give him more time being mobile & eating food! More days filled with climbing, running, and me living on edge to see where he will escape to next! - but they will be extremely expensive."
"If there’s any chance to help him, I have to take it. I’m just a desperate mum trying to give her child a fighting chance," Tammy added.
You can donate to the fundraiser here.
Niamh Shackleton