Heartbreaking diagnosis after years of testing
Thomasina (“Tammy”) McDaid, from Swansea, says her son Tate was diagnosed after 18 months of medical tests. The condition, which is genetic and terminal, gradually robs children of the skills they have learned — including walking, eating, and movement.
Tammy explained:
“My handsome little man won’t live to see his 18th birthday. My heart is broken and honestly, I am one drained mumma.”
She added:
“My little boy has never spoken a word, and now I know I will never get to hear his voice.”
No treatment available in the UK
There is currently no cure or treatment for Sanfilippo Syndrome in the UK. Tammy has quit work to spend as much time as possible with her son and is now in talks with the Cure Sanfilippo Foundation to explore potential trials in America.
“If there’s any chance to help him, I have to take it,” she said. “Even if it’s only a few more years of life and comfort, I’ll try anything to give my boy the chance to be an adult.”
These therapies could give Tate more time and comfort, but they come at a huge financial cost. Tammy has launched a GoFundMe appeal to raise £11,000 to cover travel, treatment, and care.
So far, £1,724 has been raised.
Making memories while they can
Tammy says if no viable treatment is available, funds will go toward making special memories while Tate can still enjoy life.
“Here’s to making the next few years as adventurous as possible,” she wrote.
Trips, experiences, and quiet moments together are all part of her plan to give Tate joy before the disease progresses.
Community support needed
Tammy is asking individuals, businesses, and community groups to help by donating, hosting fundraisers, or simply sharing Tate’s story.
“I know times are hard for everyone, but if you are able to donate anything at all, it would mean the world to us,” she said. “Every single pound will go directly toward giving Tate the best chance possible.”
The fundraising page is available at: Help Give My Little Boy a Fighting Chance.
