Swansea boy, 4, diagnosed with ‘childhood dementia’ Sanfilippo Syndrome

The mother of a four-year-old boy has said his “heart is broken” after he was diagnosed with a form of childhood dementia.

Tammy McDaid, from Swansea, said her son Tate suffered from Sanfilippo syndrome and was not expected to survive into adulthood.

She has set a fundraising target of £11,000 so her “beautiful little man” can take part in clinical trials overseas in the hope of slowing the development of the disease.

Tammy, 33, said her main goal was to create precious memories with her son, as there is currently no cure for his condition.

Tate, who has always been non-verbal, was diagnosed with autism at age two.

“Deep down, I always suspected there was something more,” Tammy said.

Tate had an MRI in March 2024, when doctors found spaces in her brain that were a sign of dementia, Tammy said.

He was then referred to Noah’s Ark Children’s Hospital in Cardiff, where the diagnosis of MPS III was made.

She added that her “little sidekick” made her “a very proud mother”.

“From day one, he has truly been the happiest, most content little boy,” she said.

“He loves the simple things in life and he has the most contagious smile.

“I am so blessed and proud of him. Even though he can’t speak, he hugs me and kisses me.”

Tammy said Tate loved running and climbing, and she hoped the clinical trials “could slow down the regression of [Tate’s] mobility, because that’s what’s going to hit me the hardest.”

“He could climb before he could walk. I just want him to be able to do that for as long as possible,” she said.

“My beautiful little man will not live to see his 18th birthday. My heart is broken and honestly, I am an exhausted mom.”

After setting up a GoFundMe page and receiving thousands of pounds in just days, Tammy said it was “the first time in a long time I’ve felt hope”.

“This time last week I couldn’t talk about him without crying,” she said, adding that she was grateful for the support of Ty Hafan Children’s Hospice and the local community.

Tammy said she contacted the Cure Sanfilippo Foundation to see if Tate could be accepted for clinical trials overseas.

She said she “didn’t have time to waste” as she had been told children with the condition could start to deteriorate from the age of five or six – and Tate will be five at the end of this month.

“I was diagnosed and told to come back when his condition starts to deteriorate because there is nothing that can be done. [medics] that I can do,” Tammy said.

“Next year will be pretty critical in Tate’s life because that’s when things start to show.”

If Tate is not admitted to trial, Tammy said she wants to use the money raised “to travel with him to as many countries as possible.”

Ahead of World Sanfilippo Awareness Day on Sunday, she said she also wanted to raise awareness about the condition because she and Tate’s father both carried the Sanfilippo syndrome gene.