Four-Year-Old Boy Diagnosed with Rare Childhood Dementia, Family Fundraising for Clinical Trials
A four-year-old boy from Swansea has been diagnosed with Sanfilippo Syndrome, a rare and devastating form of childhood dementia, and his family is urgently fundraising for potential clinical trials abroad.
Tate McDaid, who is non-verbal and was previously diagnosed with autism at age two, received the diagnosis after an MRI scan in March 2024 revealed spaces in his brain. Medics at Noah’s Ark Children’s Hospital in Cardiff confirmed the MPS III diagnosis, also known as Sanfilippo Syndrome. His mother, Tammy McDaid, says she is heartbroken knowing Tate is not expected to survive to adulthood, and that the condition often begins to rapidly deteriorate between the ages of five and six.
“My handsome little man won’t live to see his 18th birthday. My heart is broken and honestly, I am one drained mumma,” McDaid said. She has launched a GoFundMe campaign with a target of £11,000 to explore clinical trial options not available in the UK, hoping to slow the progression of the disease and preserve his mobility. Sanfilippo Syndrome affects approximately 1 in 50,000 births and is caused by a genetic defect that prevents the body from breaking down complex sugars.
Despite the devastating diagnosis, McDaid emphasizes her focus on creating cherished memories with Tate, who loves to run and climb. She is also working with the Cure Sanfilippo Foundation to determine if Tate meets the criteria for ongoing trials. If clinical trials are not an option, the funds will be used to allow the family to travel and experience as much as possible with Tate.
McDaid stated she was told by medical professionals to return when Tate begins to deteriorate, as there are currently no curative treatments available in the UK.
