Hi, I’m Eden and I’m raising funds for my beautiful nephew Kole. Please take the time to read his story below and donate anything you can to help pay for his treatment.

Kole’s Story

Kole was born back in 2024 and if you’d have said then two years on I’d be writing a Go Fund Me story to try and raise money to save his life I’d have said you were lying. Unfortunately, this is Kole’s parent’s new reality. As a family we are devastated.

Kole was born on the 4th of July 2024, a perfect 7lb 8oz and the final member of their little family. A dream not everyone has the privilege of making a reality. A small stay in the NICU due to a few minor complications and they thought they’d be living in their little bubble for the rest of their lives. Watching him grow and live his life any which way he’d like to with his siblings Koby and Ayla at his side.

Fast forward 6 months and it was clear Kole wasn’t hitting milestones like others his age. After many a hospital appointment he was diagnosed with BESS and Global Developmental Delay. It later became clear that although scans had shown this, our little Kole was also showing signs of severe autism at a very young age. As a family we grieved the life we thought he’d have and then accepted the cards life had dealt him, he was PERFECT just as he was and had a family behind him that would support him and his needs for the rest of his life.

Kole is now 22 months old and on Tuesday 28th of April 2026, almost two years on from one of the happiest days of our lives, Kole was diagnosed with Sanfilippo Syndrome (more commonly known as childhood dementia). This devastating diagnosis means that our perfect Kole will have his skills snatched from him from as early as 4 years old until he is snatched from us and everyone who loves him.

Trials exist all over the world and we’re fighting everyday to get their perfect boy onto one but in the meantime the FDA are reviewing and potentially approving a treatment that has already proven successful. The downside is that everything in life has a price and current estimates show a minimum of £2,000,000 needed for treatment.

We know times are hard for everyone and we know it’s a huge amount of money to raise but we have time and time is not something this disease usually gives its victims. On average people find out when it’s too late and the build up of toxins has already started on taking things away from the child.

Please help us to give our Kole as long a life as possible, to make as many memories as we can and so we can safely say we did everything we could to have him here with us for as long as possible.

We aren’t asking for thousands of pounds from individuals, we’re asking for two million people to each give as little as £1.

Thank you for reading and for helping save our Kole