Tate’s mum received the devastating diagnosis of the rare, genetic, terminal condition, in September. She’s now doing everything she can to help her son
Tate, aged four, from Swansea, who has been diagnosed with Sanfilippo Syndrome Type A – a rare, genetic and terminal condition often called childhood dementia(Image: 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 non-verbal, but apart from that, a lot of the autistic traits, he doesn’t have.” Never miss a Swansea story by signing up to our newsletter here.
Tate pictured as a baby(Image: Tammy McDaid)
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.
Tate pictured at home(Image: Tammy McDaid)
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.
“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.
“Last summer I was told he had it, but they didn’t know which one, because there are a dozen different types, and then I got told in April just gone that it was 100% he did not have it, and I was celebrating, as you can imagine, as it had been in my life for so long, and I actually started living in the moment again, because I just could not look forward to the future.
“August then, this year, they brought dementia back on the table, did some retesting and confirmed it in September.”
Tate’s mum described him as having a ‘happy go lucky’ personality(Image: Tammy McDaid)
Ms McDaid explained how she felt a “mix of emotions” upon receiving her son’s diagnosis.
She said: “I was almost relieved that I finally had answers, but in all honesty, I knew before they even put it on the table themselves, because he had the facial features.
“I was obviously sad, and I’ll be honest, I hibernated away in the house for two to three weeks. I lived in denial for a few weeks, and almost felt that if I didn’t open my front door that reality wasn’t there.
“It got to a point where, rather than sitting around in misery, I wanted to do something to try and improve Tate’s situation.
“Tate is the most happy-go-lucky child, he’s cheeky, and very loving. He’s a really nice kid to be around, and I know I’m biased, but there hasn’t been a day where I can’t wait for him to bed. He’s none the wiser to what is going on, he’s a happy child.”
With no treatment or cure currently available in the UK, and determined to help her son, Ms McDaid has now arranged a meeting with the Cure Sanfilippo Foundation to explore any possible treatment options abroad. And she continues to appeal to anyone with information on trials to come forward and share it with her.
Potential trials or therapies could give Tate more time being mobile and eating food, it is hoped, but will come at significant cost.
Ms McDaid has now launched a GoFundMe page, looking to raise a total of £11,000, so far pulling in more than £7,000.
Tate pictured with his mum, Tammy McDaid(Image: Tammy McDaid)
Mrs McDaid said: “If there’s any chance to help him, I have to take it. I’m just trying to give my child a fighting chance.
“The more eyes that are on it, it only takes one doctor, or research specialist, or someone to see Tate’s story and get in touch and guide me. When I first put the GoFundMe out, that’s how I got messaged by a parent of a child with a similar disorder. It’s a marathon, not a sprint, and it isn’t going to happen overnight, but once he starts deteriorating, he won’t have as many options when it comes to trial treatments.
“Since starting the GoFundMe, and seeing the people who have rallied around locally, and local businesses, for the first time I feel there’s some sort of hope that maybe rather than him losing his ability to walk when he’s six or seven, he might at the age of ten still have that ability if he gets on one of these trials. Because he is non-verbal, climbing and running and jumping and swinging is everything to him. He’s a ball of energy. My fight is keeping his mobility as long as possible.
“I went from feeling very alone in this world – because it is rare, there isn’t a kid down the road who has the same thing, to realising what a community we do have around us. It’s always the people you don’t expect as well. As well as the £7,000 donated on GoFundMe, there’s been £2,000 donated in cash already as well.
“Tate goes to Townhill Primary School, and they’ve been nothing short of amazing. They are doing a fundraiser on January 31, a sponsored walk to Mumbles and back. I cannot thank them enough for what they do, and they’re amazing with him, he just skips in.
“If anyone knows of any trials, or has any idea of any trials, I would encourage them to get forward with information.
“If, in the worst case, no treatment is possible, then the funds raised will go toward making as many special memories as we can while he’s still able – trips, experiences, and the ‘simple’ moments we can treasure and appreciate before the disease progresses and he becomes wheelchair-bound and dependent on machines.”
If you wish to donate to the fundraiser, you can do so by clicking here.
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