Hi everyone, it’s Tammy — Mumma to my beautiful boy, Tate who’s just turned 5!

If you know Tate, you know his cheeky smile lights up every room. From day one he’s been the happiest, most content little soul - always running, climbing, and keeping me on my toes. He loves being outside, exploring, and climbing everything he can!

When he was 2, Tate was diagnosed with autism. I always felt there was more going on. Sadly, after years of searching for answers, we’ve recently received the devastating diagnosis of Sanfilippo Syndrome Type A — a rare, genetic, terminal condition often called childhood dementia

Children with Sanfilippo slowly lose all the skills they’ve learned — walking, eating, and eventually movement. Tate has never spoken a word, and now I know I’ll never get to hear his voice. That’s a heartbreak I can barely put into words.

Right now though, Tate is still progressing He’s learning new things and enjoying life in his own adventurous way, and I desperately want to keep this chapter going for as long as possible!!

There is no cure in the world. But there are trials out there for treatment that slows the progression of the disease.

The latest news (December ‘25)

There is nothing in the UK but in America, there are hopes that a gene therapy (UX111) will be approved by the end of ‘26.

The children who have had this treatment via trials show significantly less regression compared with those kids who haven’t.

Tate turning 5 was bitter sweet. A lot can change within the next year and that’s why it’s vital to get awareness out there!

This isn’t a cure but it will significantly improve Tates quality of life

Protect his brain function for longer, slow or stabilise the disease progression and give him more time being his cheeky energetic self.

I know times are hard, but if you can donate anything at all, it means the world. Every single pound goes directly toward giving Tate the best chance possible. If you can share our story, or help fundraise, we would be so grateful.

Worst case scenario, if we run out of options in the next couple of years, then the money would be used towards giving him the best memories whilst I still can. Treatment options are looking promising though so I hope we get to use everyone’s generous donations towards just that!( I just want to be fully transparent)

Thank you from the bottom of my heart.

We’re hoping 2026 will be Tatey Matey’s year.

Love,

Tammy & Tate xxx