Hi, I'm Hannah and I’m running the London Marathon on 26th April for Hirschsprung’s Disease UK.

I’m so happy to be able to run the marathon to help support the start of this charity. If you’re able to donate, you’ll be helping a new charity get off the ground and support families living with this rare disease.

Hirschsprung’s Disease UK was founded by Georgina, someone I’ve been lucky enough to know and work with for many years. Her little boy Ffredi has Hirschsprung’s Disease, and I’ve seen their journey up close since his diagnosis.

Ffredi is the most lovely little boy, and I’ve been constantly amazed by how strong and resilient he and his family have been through the many hospital stays and medical procedures he has needed.

But like many families facing a rare condition, they had to learn an enormous amount in a very short space of time. There isn’t always clear information available, and the experience can feel incredibly isolating when you’re trying to understand what your child is going through.

When Georgina first talked about starting this charity, it was clear how needed it was- a way to support and connect families that are facing this rare disease and support much needed research. Georgina is one of the most capable, determined and all-round wonderful people I know, and I have no doubt she will do an incredible job building this charity for children like Ffredi and the families navigating this diagnosis.

Thank you so much for your support.

Ffredi's Story

Ffredi was born in April 2024 and taken to Alder Hey Children’s Hospital when he became unwell - 2 hours away from his home. After 8 days he was diagnosed with Hirschsprung’s disease, a rare disease affecting around 150 children born in the UK each there.

For children with Hirschsprung’s disease, they can’t poo and need surgery to remove the affected piece of intestine. Ffredi has surgery in August 2024 but the Hirschsprung’s disease was so extensive, he required a stoma. Since he was born, Ffredi has had 2 surgeries and more than 20 hospital stays. He now lives with a permanent stoma. In 2026, he has had 3 hospital stays for illness related to his condition.

Georgina founded Hirschsprung’s disease UK, an organisation supporting those with a diagnosis of Hirschsprung’s disease and their families. This is a volunteer led organisation which in 2026 will be:

•⁠ ⁠carrying out research to find out more about the experiences of those affected by the rare disease

•⁠ ⁠developing a parent diagnosis pack so parents can find out more about their child’s condition at the point of diagnosis

•⁠ ⁠setting up peer support networks so people can receive support from those who’ve been through similar experiences and feel less alone

The organisation is currently pending registration with the charities commission.