Hi, I’m Abi.

Eliyas is our nephew, and he means absolutely everything to our family.

He’s just one year old, and he’s already facing more than most of us ever will.

In January 2026, on his first birthday, our world changed forever. What should have been a weekend full of celebration became something none of us could have prepared for. My sister Jasmin and her husband Hasnain had to share the devastating news that Eliyas had been diagnosed with a rare genetic condition called TUBB4A-related leukodystrophy.

I will never forget that moment.

This condition affects how myelin develops in the brain, impacting movement, coordination and development. There is currently no cure, and without treatment, his future and ability to live a full life is uncertain.

But there is hope.

A pioneering gene therapy programme in Chicago, United States, could give Eliyas the chance to slow the progression of his condition and protect the abilities he has worked so hard to build through intensive physiotherapy.

This treatment is unfortunately not offered by the UK’s NHS. Early intervention is critical, and right now, we are racing against time to raise enough funds in the coming months to give him that chance.

Watching my sister and her husband navigate this has been incredibly emotional. The strength, resilience and love they show for Eliyas every single day is something I can’t even begin to put into words. They are doing everything they possibly can to fight for their son’s future, and I have so much respect for the sacrifices they are making, including relocating across the world for his treatment.

So we wanted to do something too.

That’s why we’ve decided to take on a challenge to raise funds for his treatment:

This is completely outside of our comfort zone, and something we have been training hard for in the last few weeks.

But nothing compares to what Eliyas is going through every single day.

This is our way of standing beside our family and fighting for him in the only way we know how.

If you’re able to donate, even a small amount, it would mean so much. £10, £15 anything at all helps bring Eliyas one step closer to the treatment that could change his future.

Please note that all funds will go directly towards Eliyas’ main GoFundMe page:

Eliyas GoFundMe - please consider reading the full story here too.

If you can’t donate, sharing this page helps more than you know.

You can also follow Eliyas’ journey outside of the fundraiser, on Instagram & TikTok: @eliyastubb4a, where I’ll be sharing updates on his progress, our events, and the challenges along the way.

Thank you for supporting him, and for being part of this journey.

Abi & Mac

#EliyasTubb4A