On Sunday 27th April 2025, I’ll be running the London Marathon to raise money for the Tuberous Sclerosis Association (TSA). I’m doing it for my daughter Connie, who was diagnosed with Tuberous Sclerosis Complex at 2½ years old. This rare, incurable condition has turned our world upside down - but Connie is the bravest, funniest little girl and every mile will be for her and all those living with Tuberous Sclerosis Complex (TSC).

In early 2024, our world shifted when my daughter Connie, at just 2½ years old, suddenly began having seizures. After weeks of uncertainty, hospital stays and endless tests, she was diagnosed with TSC.

TSC is a rare and complex genetic condition that causes benign tumours to grow in various organs of the body, most commonly the brain, heart, kidneys, lungs, eyes and skin. It can also cause physical disability and mental impairment. The severity of TSC varies massively from person to person - it all depends on the size of the tumours and where they grow. Right now, there is no cure.

Connie has multiple tumours on her brain, which cause complex and active epilepsy. While it’s hard not knowing what the future holds or how much she may be affected, we try to focus on making the most of each day and cherishing the now. Now 4, Connie has already been through more than most adults - but despite everything, she remains the funniest, bravest and most loving little girl. She’s cheeky, kind, totally unstoppable and full of personality. She loves a good boogie and keeps us laughing with her daily performances.

Living with TSC is unpredictable. It requires constant monitoring, regular scans, and navigating a future full of uncertainty. But no family should face that alone - and that’s why the work of the TSA matters so much.

The Tuberous Sclerosis Association is the only UK charity dedicated to supporting people affected by TSC. They fund research into treatments (and one day, we hope, a cure). They offer support and guidance to families who are often left overwhelmed and isolated. And they’ve been a lifeline for us and many others. Whether it’s practical advice, emotional reassurance, the research they fund, or the advocacy they lead - the work they do is nothing short of inspiring.

Running the London Marathon has always been on my bucket list - but now it has a far deeper purpose. I want to put myself through something hard, something that takes everything I’ve got, as a small gesture of solidarity with the daily struggles that people with TSC and their families face. If there’s even a small chance I can raise awareness, contribute to research, or make someone feel a little less alone, then I have to try. I owe it to Connie - and to myself - to meet this moment with strength and hope.

This will be one of the toughest challenges I’ve ever taken on - but every mile will be for Connie, and for the TSA, so that families like ours never have to walk this journey alone.

Every single penny truly helps. Your support will help fund research, raise awareness, and provide vital support to families like ours across the UK.

Thank you so much for your support 💚