Hi everyone, it’s Georgia — Mammy to my gorgeous boy, Cody, who is now eight years old!

If you know Cody, you know how much everyone loves him. He lights up every room with the most contagious smile He is a genuinely loving little boy who adores his family and a good cuddle.

The Reality of Sanfilippo Syndrome

When he was 3, Cody received the devastating diagnosis of Sanfilippo Syndrome Type A — a rare, genetic, terminal condition often called "childhood dementia."

Children with Sanfilippo Syndrome typically have a life expectancy that reaches only the late teens. Cody is already 8 years old, which makes time incredibly precious for us. Every moment matters more than ever, and we are desperately trying to hold on to as many memories, milestones, and smiles as we can.

Children with Sanfilippo slowly lose every skill they’ve learned. Sadly, we are seeing this happen now. Cody’s mobility is noticeably declining; he struggles with daily aches and pains, and he is moving toward a feeding tube as eating becomes more difficult. Most heartbreaking of all are the terrifying seizures he now suffers. I cannot bear to see any more of him fade away before my eyes.

Our Hope: Gene Therapy (UX111)

While there is currently no cure, there is a massive beacon of hope in America. A gene therapy called UX111 is expected to be approved by the end of 2026. Data from clinical trials shows that children who receive this treatment experience significantly less regression.

It isn’t a cure, but it is a lifeline. It could:

• Protect his brain function for longer.

• Slow or stabilise the disease progression.

• Give him more time to remember his family and keep flashing those beautiful smiles.

How You Can Help

There is currently nothing available in the UK, so we are raising funds to get Cody to America to access this treatment the moment it becomes available.

I know times are hard, but if you can donate anything at all, it means the world. Every single pound goes directly toward giving Cody the best chance possible. If you can’t donate, please consider sharing our story—awareness is just as vital.

Note: In the event that medical options change, all funds will be used toward Cody’s ongoing medical needs, his hospice care, and the charities that support us.

From the bottom of my heart, thank you. All I want is more time with my boy