Help Give Eliyas the Chance Every Child Deserves

Our beautiful son, Eliyas, is just 18 months old.

He loves giggling at silly animal noises, watching the world with quiet curiosity, and studying our faces with deep concentration. He is determined, full of joy, and the centre of our world.

Behind his beautiful smile, Eliyas is living with an ultra-rare genetic condition called TUBB4A-related leukodystrophy.

This devastating neurological disorder affects the development of myelin—the protective coating around nerve fibres that allows the brain to communicate with the rest of the body. Without healthy myelin, children can struggle to develop movement, coordination, speech

and other essential skills. Many experience progressive neurological decline, severe disability and a significantly shortened life expectancy.

When Eliyas was first diagnosed, our world fell apart.

What we believed was a simple developmental delay became every parents worst nightmare. Genetic testing confirmed that Eliyas carries a disease-causing variant in the TUBB4A gene—a condition so rare that only a handful of children worldwide are known to be living with it.

Yet every single day, Eliyas reminds us what courage looks like.

He works tirelessly through physiotherapy to achieve milestones that most children reach naturally. Holding his head a little longer, rolling independently, making a new sound or reaching for a toy are victories we celebrate with overwhelming pride. Every achievement

represents countless hours of determination and hope.

As his parents, we refuse to stop fighting for him.

That fight has led us to a pioneering personalised antisense oligonucleotide (ASO) gene therapy programme at Rush University Medical Center in Chicago, USA. Eliyas has been assessed and accepted for this investigational treatment, which has been designed specifically

for children with his genetic condition.

This programme offers something we never thought we would have:

Hope.

Hope that the progression of this devastating disease may be slowed.

Hope that more of Eliyas's abilities can be preserved.

Hope that he will have the opportunity to achieve milestones that once felt impossible.

For us, this treatment is about so much more than medicine. It is about giving our son more time to learn, more time to grow, more time to laugh, and more time to experience childhood.

Because TUBB4A-related leukodystrophy is a progressive condition, time is incredibly precious. Early intervention offers the greatest opportunity to protect neurological function before irreversible damage occurs. Every month matters. Unfortunately, this specialised treatment is not available through the NHS and must be funded privately.

We are therefore asking for your support to help cover:

We are committed to complete financial transparency and will provide regular updates throughout Eliyas's treatment journey.

Eliyas's Story in the Media

We are incredibly grateful to the journalists, broadcasters, charities and organisations who have helped share Eliyas's story. Their support has raised vital awareness of TUBB4A-related leukodystrophy and helped our campaign reach families, communities and supporters across

the UK and beyond.

You can read and watch Eliyas's journey here:

The Sheffield 1000 – Eliyas: Life Saving Treatment

https://thesheffield1000.org/eliyas-life-saving-treatment/

 BBC News – Parents race to raise funds for son's life-changing treatment

https://www.bbc.co.uk/news/articles/ckg49l82zglo

 Yorkshire Live – Facebook feature on Eliyas's fundraising campaign

https://www.facebook.com/yorkshirelive/photos/a-west-yorkshire-couple-are-desperately-trying-to-raise-200000-to-get-their-baby/1488210220016589/

 People Magazine – UK Mom Says Moving Is the Only Chance to Save Her Son

https://people.com/u-k-mom-says-moving-is-the-only-chance-to-save-her-son-16-months-11995276

 Run For All – One-Year-Old Eliyas Fights Rare Condition as Mum Takes on 10KChallenge

https://www.runforall.com/community/people-stories/one-year-old-eliyas-fights-rare-condition-as-mum-takes-on-10k-challenge/

 ITV News Calendar – Toddler is one of only 12 children worldwide with rare genetic condition

https://www.itv.com/news/calendar/2026-06-03/toddler-is-one-of-only-12-children-worldwide-with-rare-genetic-condition

 BBC Look North – Television feature

https://youtu.be/CG6dWlU6sGk

We are deeply thankful to every journalist, producer, photographer and organisation that has helped amplify Eliyas's voice. Their kindness has enabled thousands more people to learn about this devastating condition and has given our family hope during the most difficult time

of our lives.

Today, we are asking for your help.

Every donation, no matter the size, brings Eliyas one step closer to the treatment that could change the course of his life.

If you are unable to donate, sharing Eliyas's story with your friends, family, workplace, school, faith group or community could help us reach someone who can.

Our greatest wish is beautifully simple.

To give our son the chance to grow.

The chance to learn.

The chance to laugh.

The chance to play.

The chance to build a future.

The chance every child deserves.

From the bottom of our hearts, thank you for standing with our family, believing in Eliyas, and giving us hope.

With love and gratitude,

Jasmin, Hasnain & Eliyas