A distraught mother is making every effort to provide her four-year-old son with a chance at a better life following a heartbreaking medical diagnosis.
In 2023, young Tate, hailing from Swansea, Wales, was diagnosed with autism. However, his mother, Tammy McDaid, suspected that there might be a deeper issue. Determined to find answers, Tammy continued to pursue further investigations for her son. It wasn’t until an MRI scan conducted earlier this year that her concerns were confirmed.
After undergoing extensive tests, Tate was diagnosed with Sanfilippo Syndrome Type A, a rare genetic condition often referred to as ‘childhood dementia’. This terminal illness leads to the gradual loss of skills, impacting a child’s ability to walk, eat, and eventually move independently.
The Cleveland Clinic states that this condition affects approximately one in every 50,000 to 250,000 people.
Regarding the causes of Sanfilippo Syndrome, the health website notes: “Sanfilippo syndrome is a lysosomal storage disease (LSD). These are genetic conditions that cause a buildup of toxic substances in your body’s cells.
“People with LSD lack certain enzymes. Without functioning enzymes, your body can’t break down certain substances. If they build up in your body, it can be harmful.”
Currently, there is no known cure for this genetic disorder, but Tammy is actively seeking potential treatment options for Tate outside of the country.
Describing the lengthy process leading to Tate’s diagnosis, Tammy revealed: “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.”
It wasn’t until September that Tate received a definitive diagnosis of childhood dementia. For individuals with Type A, like Tate, the life expectancy is typically between 11 and 19 years.
In light of this diagnosis, Tammy is now fully dedicated to seeking possible treatments for Tate and has initiated a GoFundMe page. At the time of writing, the fundraiser has garnered over £11,000 in donations.
In her message on the fundraising page, Tammy wrote: “There is currently no treatment or cure available in the UK, but I have a meeting soon with the Cure Sanfilippo Foundation to explore any possible treatment options abroad.
“These potential trials or therapies could give him more time being mobile & eating food! More days filled with climbing, running, and me living on edge to see where he will escape to next! – but they will be extremely expensive.”
“If there’s any chance to help him, I have to take it. I’m just a desperate mum trying to give her child a fighting chance,” Tammy added.
You can donate to the fundraiser here.