I’m running the Battersea Half Marathon in September to raise £10,000, split equally between two causes that are deeply personal to me and my family. £5,000 will go towards LNS Charity (Love Never Sinks) supporting children and families affected by Lesch-Nyhan syndrome, and £5,000 will go to Small Steps, a charity that has been a consistent and meaningful part of my son Luca’s journey.

Luca lives with Lesch-Nyhan syndrome, a condition so rare it affects around 1 in 300,000 people. He also has a variant of the condition that, as far as we know, only two people (including him) in the world are documented to have. What that means in reality is that there isn’t a clear roadmap, and there is still so much that isn’t understood.

Every day, Luca works hard towards having the best possible chance of greater independence. As parents, we do everything we can to support him, learning, adapting, and showing up in ways we never expected.

At the same time, Luca is full of joy. He brings so much light into our lives, and we are incredibly grateful for him. That’s why I’ve decided to take on a half marathon. Running has never come naturally to me, and with asthma it’s something I’ve always had to manage carefully. But this challenge feels small compared to what Luca faces every single day.

I’m raising money for two reasons:

1. To support research for Lesch-Nyhan syndrome - Because families like ours need more answers, better understanding, and real progress.

2. To support Small Steps - Because they are doing the work right now, supporting children like Luca with free hands-on care, development, and encouragement every single week.

If you’re able to support, thank you. If you’re not, sharing this page goes a long way.

This is about giving Luca and children like him a better chance. Luca gives his best every day, so I will give mine too.

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