My son, Eliyas, is one year old.

Sometimes I just sit and watch him… the way he laughs at the smallest things, the way he studies my face so closely, like he’s trying to memorise me.

I don’t think he knows how much I memorise him too.

Every smile. Every little sound. Every tiny bit of progress.

Because nothing about his journey has been easy.

Eliyas is living with a rare genetic condition called TUBB4A-related leukodystrophy. Before him, I had never even heard those words. Now they are part of my everyday life.

I remember the moment everything changed.

Being told it wasn’t just a delay.

Sitting there trying to understand what this meant for my baby.

They told me it was rare.

They told me it could affect how long he lives.

They told me he might lose skills over time.

And all I could think was…

how is this happening to my child?

But Eliyas doesn’t know any of that.

He just keeps trying.

He fights for things other babies do without thinking. Lifting his head. Holding himself up. Making new sounds.

And every time he does something small, something most people wouldn’t even notice… it feels like everything to me.

Because I know how hard he worked for it.

As his mum, there’s a kind of helplessness I never knew existed.

Wanting to take this away from him.

Wanting to swap places.

Wanting to do anything so he doesn’t have to struggle like this.

But the one thing I can do… is fight for him.

There is a gene therapy programme in the US that could give Eliyas a chance. Not a guarantee. But a chance.

And when it’s your child, a chance is everything.

A chance for more time.

A chance for more milestones.

A chance to hear him say words one day.

A chance to watch him grow up.

Time matters so much with this condition. Waiting isn’t something we can afford.

So on June 14th, I’ll be running a 10k for him.

Truthfully, it feels insignificant compared to what he goes through every day… but it’s something I can do. It’s my way of standing up and saying I will do everything in my power for my son.

The treatment and care come with costs far beyond what I can manage alone, and it isn’t something covered by the NHS.

I’m asking for help to give Eliyas that chance.

Every donation, every share, every bit of support — it all matters more than I can explain.

Because this isn’t just about treatment.

It’s about giving my son a life.

A life where he has the chance to grow, to learn, to laugh, to be here longer with the people who love him more than anything.

If you’ve read this far, thank you. Truly.

And if you can help in any way at all, I will carry that gratitude with me forever.