A MUM who thought her son was “too good to be true” because he rarely cried as a baby was shocked to discover it was a sign of childhood dementia.
Tammy McDaid, 34, took her son Tate to the doctors when he was two-ears-od, thinking his lack of reactions was a sign of .
Tate rarely cried as a baby and his mum just thought he was a good child Credit: SWNS
But Tate’s mum Tammy was devastated to discover it was a sign of childhood dementia Credit: SWNS
But there, doctors noticed a bump on his head and referred him for a CT scan.
The scan flagged the possibility that Tate had Sanfilippo syndrome – better known as .
The disease causes severe intellectual and sadly tends to lead to death in teenage years.
Tammy, from Swansea, , was devastated by this , but said: “Had Tate not had autistic traits very young, we wouldn’t have had the CT scan and we wouldn’t have had the diagnosis.
“It was blatant as day that he was autistic. The only time he gave me eye contact was when I sang to him.
“He was in his own little world and was so content and rarely cried.”
After scans at Birmingham Women’s and Children’s hospital flagged the potential diagnosis, the family were referred to Noah’s Ark Children’s Hospital, .
Sanfilippo syndrome births, or 240 children born in the UK every year.
After a CT scan, Tate’s family were told it was likely he had Sanfilippo syndrome Credit: SWNS
The family only got the diagnosis after Tammy took Tate to the doctor when he was two-years-old because she thought he might be autistic Credit: SWNS
It is a rare neurodegenerative disease which causes children to lose all the skills they’re gained, such as talking and walking, and suffer from seizures and movement disorders.
The condition sadly does not have a cure and treatment on the mostly focuses on pain management.
Its symptoms, which worsen as kids get older, mean it is often described as causingor Alzheimer’s.
Thirteen months after doctors said Tate could have Sanfilippo syndrome, Tammy was reassured that he did not have it.
But the mum, a hospitality manager, was “almost certain” he did, in part due to his facial .
Children with Sanfilippo syndrome typically have full lips, a button nose and coarse heavy eyebrows.
“When it was first mentioned, I went on social media and saw other children that looked exactly like my son. But then the experts said it wasn’t that so I doubted myself,” she said.
Speaking about the initial mention of the disease, Tammy said: “In August 2025, they called me back in for a meeting with a genetic doctor and a metabolic doctor.
“This is where we were told Sanfilippo was on the table and it could be Type A, the worst one.
“It took me four hours to do a 45 minute drive home because I was having panic attacks and couldn’t stop crying.”
She continued: “It was horrible that they took it off the table and then slammed it back on as it put me on a yo-yo for 18 months.
“It was mid-September when we got the official diagnosis of Sanfilippo Type A.”
Speaking about what is to come, Tammy said: “As it progresses, Tate will start losing the ability to eat, walk, communicate.
“The brain damage takes over and he will become completely bed bound and dependent on machines.
“It completely overrides the body and is the absolute worst way for someone to die, but you just don’t know when it will happen because it’s so rare.”
The mum has now given up on applying for medical trials for Tate and is hoping that a revolutionary drug will be approved by the Food and Drug Administration (FDA) in America in September this year.
Tammy is hoping a drug will be approved in the US in September that could help with Tate’s condition Credit: SWNS SANFILIPPO syndrome – also known as Mucopolysaccharidosis type III or MPS III – is a rare neurodegenerative disease.
It causes children to lose all the skills they’ve gained (like talking and walking), suffer seizures and movement disorders, and experience pain.
Its symptoms, which worsen as kids get older, mean it is often described as causing childhood dementia or Alzheimer’s.
Sanfilippo Syndrome is estimated to affect one in every 70,000 births.
It occurs in children born with a single genetic defect that causes their body to lack a necessary enzyme.
Symptoms, which also include speech and language delays, ear infections, headaches, sleep problems and hyperactivity, usually surface between the ages of one and six.
Sadly, it has a 100 per cent mortality rate, with sufferers typically passing away in their early teens.
There is currently no cure, but clinical trials for enzyme replacement therapy and gene therapy are taking place.
Source: Cure Sanfilippo Foundation
If the drug is approved, it would be the first-ever available treatment for this rare paediatric disease.
There is no official fee for the treatment, but Tammy has learned from a Sanfilippo that it could cost anywhere between £1.5 million and £3 million.
Tammy said: “What hurts me is that I was applying for trials when they first put Sanfilippo on the table, but they closed in August, just before we got the official diagnosis.
“If the diagnosis wasn’t delayed then we could have got into one and life could be completely different which is incredibly frustrating but now I’m giving up applying for trials.
“Once the FDA approves the treatment, the only battle I have is and the longer that takes, the more Tate deteriorates.”
But the mum said that at the moment, “Tate is a chicken”.
“He lives to climb, he runs like and I want to keep that,” she added.
While the treatment does not reverse the symptoms, it should stop any further brain damage from occurring.
Tammy continued: “I live in a world of hope and denial because I have to live in a world where he gets this treatment.
“I don’t look past the end of the year because so much can change in just a few months, but this treatment will allow me to look to our future again.”
Tammy is now officially through Just4Children, a registered charity, to raise funds for this treatment .
Eze Chidiebere Paul
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