13 hours ago

'My son, 4, has childhood dementia - I'm heartbroken'

Tammy McDaid A little boy with short light brown hair and blue eyes is looking at the camera while sitting in a car with his mum. His mum has blue eyes and long blonde hair and is wearing a nose ring. She is smilingTammy McDaid

Tammy McDaid says she is hoping Tate can be accepted on to clinical trials which are only available outside the UK

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.

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 McDaid A young boy is smiling while running along a path in the countryside. He is wearing a blue hooded top and blue and white striped shorts and blue croc shoes. There are shrubs and trees in the distance. Tammy McDaid

One of Tate's favourite activities is spending time outdoors and running, his mum Tammy says

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 McDaid A little boy with light brown short hair is smiling while standing on a pink pedal boat on a lake. He is wearing a blue T-shirt, striped blue shorts and a turquoise life jacket. There are large pedal boats shaped like swans and other birds behind him.Tammy McDaid

Tammy McDaid says Tate is "beautiful and the most energetic, hyper and giggly little man"

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."

Tammy McDaid Tate is looking back and smiling while riding a tricycle.Tammy McDaid

Tate loves to be outdoors

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.

Read Entire Article

Comments

News Networks