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My name is Kayleigh, and I’m raising funds for my beautiful little boy, Jax, who is just 3 years old.
Jax has been diagnosed with Duchenne Muscular Dystrophy (DMD) — a rare, progressive genetic condition that causes muscle weakness and, over time, affects the heart and lungs.
Right now, Jax is still walking, running, laughing, and doing all the things a 3-year-old should be doing. But without treatment, DMD slowly takes those abilities away.
There is no cure for Duchenne — but there is hope.
Why Gene Therapy Matters
Gene therapy offers the chance to slow the progression of Duchenne, helping preserve muscle strength and function for as long as possible. For children like Jax, receiving treatment early — while they are still young and ambulatory — can make a huge difference to their future quality of life.
Why We’re Looking to the US
In the UK, access to gene therapy is extremely limited. Current options are mainly through clinical trials, which:
Have very few places available
Are subject to strict criteria
Cannot guarantee access, even for eligible children
Despite doing everything we can, there is no certainty that Jax will be offered a place on a UK trial — and time is something children with Duchenne simply don’t have.
In the United States, gene therapy is available privately. However, the cost is far beyond what our family could ever afford on our own.
What Your Support Will Do
Funds raised will go towards:
- Gene therapy treatment in the US
- Medical assessments and travel
- Accommodation and ongoing care related to treatment
- Health Insurance
- Travel visas
The total cost for our family to achieve this is £60,000.
We’re raising this in stages so we can move forward step by step.
10k -First milestone: covers insurance & flights.
Every donation — no matter the size — brings Jax one step closer to a future with more strength, more independence, and more time doing the things he loves.
From Our Family to You
As parents, all we want is to give our child the best possible chance. Jax didn’t choose this diagnosis — but together, we can choose to fight for him.
If you’re unable to donate, sharing this page means just as much.
Thank you from the bottom of our hearts for reading, caring, and supporting Jax.
With love, Kayleigh and Nathan.
Jax's parents ❤️