A mother in the U.K. is fighting to get her 4-year-old son accepted into a clinical trial that could help slow the progression of his rare, degenerative condition often referred to as childhood dementia.
“The next year is quite critical in Tate’s life as it’s around now that things start to show,” Tammy McDaid told the BBC about her son, Tate. He was first diagnosed with autism at age 2, but McDaid, who is from Swansea, Wales, said she always felt something more was happening.
An MRI scan in March 2024 revealed concerning changes in Tate’s brain, and after further testing, he was diagnosed with Sanfilippo Syndrome — a genetic disorder that affects the central nervous system. According to the Cleveland Clinic, the disease leads to cognitive, behavioral, and physical decline, and ultimately, premature death. There is currently no cure, and treatment focuses only on managing the worsening symptoms, which may include gastrointestinal issues, ear, nose and throat complications, and progressive intellectual disabilities.
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Children with Type A — the most severe form and the type Tate has — typically have a life expectancy of 11 to 19 years. McDaid wrote on a GoFundMe page created to help cover his care, “My little boy has never spoken a word, and now I know I will never get to hear his voice.”
The funds are intended to help the family seek treatment options outside the U.K. “These potential trials or therapies could give him more time being mobile and eating food!” she wrote. “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,” McDaid added.
Although she knows the disease cannot be cured, she hopes doctors can slow the loss of Tate’s mobility — something she fears most. “He could climb before he could walk,” she told the BBC. “I just want him to be able to do this for as long as possible.”
“I am so blessed and proud of him,” she said. “Even though he can’t talk, he hugs and kisses me.”
