Tammy McDaid is raising money to get her son treatment to slow the progression of his rare genetic disorder, Sanfilippo Syndrome

A U.K. mom is racing against the clock to get her son, 4, accepted in a clinical trial to fight his rare, degenerative form of 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 initially diagnosed with autism at age 2, but as his mom, who hails from Swansea, Wales, said, “Deep down I always suspected there was something more.”

An MRI scan in March 2024 showed spaces in Tate’s brain that were indicative of dementia, and further testing led to the diagnosis of Sanfilippo Syndrome. It’s a genetic disorder that primarily impacts the central nervous system, and causes cognitive, behavioral, and physical symptoms, Cleveland Clinic explains, which “lead to premature death.” There is no cure, and the only treatment is management of symptoms, which include gastrointestinal and ear, nose, and throat problems, along with intellectual disabilities that worsen over time — hence the nickname “childhood dementia.”

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Children diagnosed with Type A, which Tate has, have a life expectancy of 11 to 19 years. As McDaid wrote in the GoFundMe established to pay for his care, “My little boy has never spoken a word, and now I know I will never get to hear his voice.”

The money McDaid is raising is intended “to explore any possible treatment options abroad,” she wrote. ”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,” McDaid wrote.

While she knows there isn’t a cure, McDaid is hoping to “slow down the regression of [Tate’s] mobility, as that is what is going to hit me the hardest,” she told the BBC. “He could climb before he could walk. I just want him to be able to do this for as long as possible.”

“I am so blessed and proud of him. Even though he can’t talk, he hugs and kisses me.”