Our beautiful son, Eliyas, is just one year old.

He loves giggling at silly animal noises and studying our faces with deep concentration. He is curious, determined, and full of light. He is our whole world.

Behind his bright smile, Eliyas is living with an extremely rare genetic condition called TUBB4A-related leukodystrophy. This disorder affects the development of myelin in the brain an essential substance for movement, coordination, and overall neurological function.

When Eliyas was first diagnosed, our world stopped. What we believed was a simple developmental delay turned out to be something far more serious. Genetic testing confirmed that he carries a pathogenic TUBB4A variant, a condition so rare that only a small number of children worldwide are known to have it. In most cases, this disorder can limit life expectancy and lead to the loss of skills over time.

Despite this, Eliyas continues to fight every single day.

He works incredibly hard just to lift his head. He pushes through physiotherapy sessions with courage and determination. Every small milestone, holding his head a little longer, rolling with more strength, making a new sound, feels like a miracle to us.

As his parents, we refuse to give up on him. And in our darkest moments, we have found hope.

A pioneering gene therapy programme in the United States is offering Eliyas a chance, not just to manage symptoms, but potentially to slow or alter the course of this devastating condition. This treatment represents more than medicine. It represents time with our son and the possibility of a future together, as a family.

Time is critical, as early intervention offers the best chance for this treatment to be effective.

However, this opportunity comes at an enormous financial cost, which the NHS cannot cover. We are humbly asking for your help to raise funds for:

We are committed to full financial transparency and will provide regular public updates on Eliyas’s progress. Any surplus funds raised will be donated to the n-Lorem Foundation, so they can continue developing life-changing treatments for other children with rare conditions like our son.

We are humbly asking for your support. Every donation, no matter how small, brings Eliyas one step closer to the treatment that could change the trajectory of his life.

Most of all, we are asking for your help to give our son a chance, a chance to grow, to learn, to laugh, and to live the life any child deserves.

From the bottom of our hearts, thank you for supporting our son, Eliyas.

Jasmin & Hasnain