‘My Son, 4, Has Childhood Dementia – I’m Heartbroken’

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

Tammy McDaid, from Swansea, said her son Tate has Sanfilippo Syndrome and is not expected to survive to adulthood.

She has set an £11,000 fundraising target for her “handsome little man” to potentially take part in clinical trials abroad in the hope of slowing the development of the disease.

Tammy, 33, said her main focus was on making precious memories with her son, as there is currently no cure for his condition.

Sanfilippo Syndrome Type A, also known as Mucopolysaccharidosis type III (MPS III), causes the gradual loss of abilities, such as walking and eating.

Because of its neurodegenerative nature, Sanfilippo Syndrome is often called “childhood Alzheimer’s” or “childhood dementia.”

According to the Society for Mucopolysaccharide Diseases (MPS Society), a charity which helps children living with Sanfilippo Syndrome, about 140 children in the UK have the condition.

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

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

Tate underwent an MRI scan in March 2024, when medics found spaces in his brain which were a sign of dementia, Tammy said.

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

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

“From day one he really has been the most happy and content little boy,” she said.

“He enjoys 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 talk, he hugs and kisses me.”

Tammy said Tate loves to run and climb, and she hoped clinical trials “can slow down the regression of [Tate’s] mobility, as that is what is going to hit me the hardest”.

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

“My handsome little man won’t live to see his 18th birthday. My heart is broken and honestly, I am one drained mumma.”

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

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

Tammy said she had contacted the Cure Sanfilippo Foundation to see if Tate could be accepted on to any clinical trials abroad.

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

“I got the diagnosis and got told basically to come back when he starts deteriorating because there is nothing they [medics] can do,” said Tammy.

“The next year is quite critical in Tate’s life as it’s around now that things start to show.”

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

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