Sam’s Fundraising Story

Sam, cousin to Harry who is living with Dravet Syndrome, takes on the London Marathon in 2026.

We asked him to share more about why he’s putting himself through 26.2 miles for Dravet Syndrome UK this April.

“I am currently training for the London Marathon 2026 to support Dravet Syndrome UK, a charity dedicated to raising awareness and supporting families affected by this rare and severe form of epilepsy. I have been consistently training each week for the past 20 weeks in preparation for the marathon. Training has been tough, with long mileage each weekend and training runs during the week too. I’m tapering now and I can’t believe the marathon is only a week away!

My motivation is deeply personal, as my cousin Harry was diagnosed with Dravet Syndrome at just 16 months old. Seeing first-hand the challenges he and our family face has inspired me to take on this challenge, not only to raise vital funds but also to increase awareness and understanding of the condition. Taking on the London Marathon reflects my commitment, resilience, and desire to make a positive difference.

Harry is just four years old. Despite his young age, he shows remarkable resilience and strength in everything he faces. His courage and determination shine through even in the toughest moments, inspiring everyone around him. He really is a cheeky, happy little chap.

Having a fundraising target of £2,500 felt big, but I’ve broken it down into different events and fundraisers. I’d love to thank everyone who got involved with the fundraising football cards and to each and every person who has made a donation through my online fundraising page. Everyone has been so generous and I’m really so very grateful.

A huge thank you goes to my partner, Chloe, who organised a raffle this month. She secured prizes from organisations such as the Snow Dome, organised and presented the raffle and gathered donations from the ticket sales. Chloe has been by my side through all the fundraising and marathon training so I want to thank her for all her amazing support!

My Mom, Tina, and her colleagues, Julie and Vicky, organised a fundraising day at the Co-Op Funeral Care in Shirley where they work, which raised a huge £802! Thank you to everyone who made contributions and donated on the day.

I’m really proud to have raised at least £3,418 for Dravet Syndrome UK. And there is more to come! I’m highly motivated to continue pushing forward and raise even more to support the vital work the charity does. This journey has not only tested me physically but has also strengthened my drive to make a meaningful difference for those affected by the condition.”

We want to wish Sam the very best of luck for the rest of his training and the 26.2 miles he’ll cover on the 26th April. You’ve got lots of support and people cheering you on from the sidelines – go smash it, Sam!

A toddler with blonde hair, wearing denim dungarees, smiles to camera

Harry’s Story

You can read more about Sam’s inspiration, his cousin Harry, here.

Fundraise for us

Inspired? You don’t have to run a marathon to raise funds for Dravet Syndrome UK. We’ve got plenty of ways you can get involved here.

Make a donation

Help us to support more families like Harry’s, educate more professionals and fund more research into this complex condition.