'My son has childhood dementia, I want to give him a fighting chance'

Four-year-old Tate received the devastating diagnosis of a rare, genetic, terminal condition in September. Now his mum is doing all she can to help him, as Robert Dalling reports

- Robert Dalling

Tate's mum described him as having a 'happy go lucky' personality

(Tammy McDaid)

THE heartbroken mum of a four-year-old boy diagnosed with a form of childhood dementia has opened up over the devastating news, and how determined she is to give him a “fighting chance”.

When he was just two years old, Tate, from Swansea, was diagnosed with autism, something his mum Tammy McDaid embraced with “love and patience”. But deep down, she always felt there was something more.

“He was too happy,” she said. “I know that sounds ridiculous, but as most people know with autism, children have structure, and need their emotions regulated more than your typical child.

“Tate has never cried for more than a minute in his life, and doesn’t get upset easily and routine has never been a thing for him.

“He's nonverbal, but apart from that, a lot of the autistic traits, he doesn’t have.”

And her motherly instincts were right.

After “years of worry and searching for answers”, a metabolic doctor at Noah’s Ark Children’s Hospital in Cardiff delivered a diagnosis in September that Tate, now aged four, had Sanfilippo Syndrome Type A - a rare, genetic and terminal condition often called childhood dementia.

There are only 140 children in the UK living with the condition, according to the Society for Mucopolysaccharide Diseases.

Children with the condition gradually lose all the skills they've learned, including their ability to walk, eat, and eventually even move independently.

Ms McDaid explained: “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.