Mom Fights to Save 4-Year-Old Son Diagnosed with ‘Childhood Dementia’

Tammy McDaid’s world shattered when doctors told her that her 4-year-old son, Tate, was slowly losing the abilities he’d spent his short life learning — and that nothing could stop it.

Tate has Sanfilippo Syndrome Type A, a rare and fatal genetic disorder often referred to as “childhood dementia.” It attacks the central nervous system, causing children to lose speech, mobility, and memory — before taking their lives, often before adulthood.

“I will never get to hear his voice,” McDaid said quietly, her words breaking. “My little boy has never spoken a word, and now I know I never will.”

Doctors first believed Tate was autistic. But in March 2024, an MRI revealed gaps in his brain — early signs of dementia. Soon after, genetic testing confirmed the family’s worst fear: Sanfilippo Syndrome, Type A.

“The next year is quite critical in Tate’s life,” McDaid told the BBC. “It’s around now that things start to show. He’s already starting to lose skills he worked so hard to learn.”

Children with Tate’s form of the disorder rarely live past their teens. There’s no cure, and treatment is limited to managing symptoms like sleep issues, loss of motor skills, and behavioral changes.

“It’s devastating,” McDaid said. “He could climb before he could walk — I just want him to be able to do that for as long as possible.”

McDaid is now raising money to get Tate accepted into an experimental therapy trial overseas. The potential treatments could slow the disease’s progression — giving him precious extra time to move, eat, and play.

“These trials are my only hope,” she wrote on her GoFundMe page. “If there’s any chance to help him, I have to take it.”

But the treatments are expensive — costing hundreds of thousands of dollars. McDaid has launched a public campaign to raise the funds, appealing to parents around the world who understand what it means to fight for a child’s life.

“Every donation, every share — it’s a chance for Tate to keep running, climbing, and smiling a little longer,” she said.

According to the Cleveland Clinic, Sanfilippo Syndrome is caused by a missing enzyme that prevents the body from breaking down certain sugars. Over time, these sugars build up in the brain, leading to cognitive and physical decline.

It’s so rare that many pediatricians will never see a case in their careers. Roughly one in 70,000 children are born with it.

“It’s often called childhood Alzheimer’s,” said Dr. Hannah Lowe, a pediatric neurologist not associated with Tate’s care. “But unlike adults, these children never had the chance to live full lives before it began.”

For now, McDaid focuses on the moments that still bring light to her days.

“I am so proud of him,” she said. “Even though he can’t talk, he hugs and kisses me. He shows love in his own way — and that means everything.”

She hopes Tate’s story will raise awareness about Sanfilippo Syndrome — and inspire more research into treatments that could give children like him a future.

“I know what’s coming,” McDaid said softly. “But as long as he’s here, I’ll fight every single day for him.”

To support Tate’s treatment campaign, visit: https://www.gofundme.com/f/help-give-my-little-boy-a-fighting-chance

Sources: BBC News, Cleveland Clinic, GoFundMe