Help us change Axelle's future

Five years ago, my daughter Axelle was born.

It was a normal pregnancy.

She was just a tiny baby.

We left the maternity ward after 24 hours believing our life was beginning.

We had no idea it had already changed forever.

At first, it was small things.

She couldn't feed properly.

She cried constantly.

She didn't look at me.

She didn't follow the mobile above her cot.

She didn't smile.

I knew something wasn't right.

People kept telling me she was "just a little baby" and that I worried too much.

But a mother knows.

What followed was months of appointments.

An ophthalmologist.

A paediatrician.

Another paediatrician.

Then another.

Until one day, someone asked a different question:

**"Does she look like the rest of your family?"**

That was the moment everything changed.

Genetic testing followed.

And then came a word I had never heard before.

**FOXG1.**

An ultra-rare genetic condition affecting only a few hundred children worldwide.

No cure.

No approved treatment.

No roadmap.

Only uncertainty.

You don't just receive a diagnosis.

You grieve the future you imagined.

Will she ever be able to tell me she's in pain?

That she's hungry?

Scared?

Will she ever be able to point at what she wants?

Will she walk towards me?

Will she ever say "Mum"?

For five years, we have refused to give up.

Our lives have become therapy sessions, hospital appointments, intensive rehabilitation and countless hours fighting for every tiny achievement.

I have recorded television reports from my daughter's hospital bedside. I've gone live on air while she was having physiotherapy next to me. Not because I was brave, but because life had to go on.

What most children learn naturally, Axelle has had to fight for.

Every step.

Every movement.

Every new skill.

Every smile.

Today, she is five years old.

She still cannot speak.

She still needs help with almost every aspect of daily life.

But she has something extraordinary.

An incredible determination.

She never stops trying.

And neither will we.

When Axelle was diagnosed, there was almost no research and no realistic prospect of treatment.

Today, the picture is changing.

Gene therapy is no longer science fiction. Around the world, scientists are making remarkable progress, and for the first time, we truly believe that treatments are within reach.

That is why I founded **FOXG1 UK**.

Our charity is working alongside researchers at **King's College London** to help accelerate research into FOXG1 syndrome. Together, we want to support groundbreaking science, encourage international collaboration, and help move promising discoveries from the laboratory towards clinical trials.

Every pound raised brings us closer to that goal.

It helps fund research.

It helps build collaborations.

It helps families feel less alone.

Most importantly, it helps give children like Axelle a chance at a better future.

As a journalist, I've spent years telling other people's stories.

Today, I'm asking you to become part of ours.

If everyone reading this donated just **£10**, together we could make an extraordinary difference.

One day, I hope Axelle will be able to tell me how she feels.

One day, I hope she will be able to tell me she's hungry.

Or scared.

Or simply...

**"Mummy."**

And one day, I hope no parent will ever again hear the words:

**"There is nothing we can do."**

Until then, we will keep fighting.

Thank you for taking the time to read our story.

Thank you for believing in science.

Thank you for believing that children with rare diseases deserve the same chance as every other child.

And thank you, from the bottom of our hearts, for believing in Axelle.