On the 9th - 15th December Oli is taking on an massive challenge. He will be running SEVEN MARATHONS IN SEVEN DAYS to raise awareness and funds for Creld1 Warriors, a vital organization dedicated to research and support for children affected by Creld1.

What is Creld1?

Creld1 is a rare genetic disorder that affects the development and function of multiple organ systems. Children with Creld1 often face severe health challenges, including heart defects, severe bilateral neural hearing loss, immature eye development, immune dysfunction, and neurological issues including severe seizures. Tragically, many of these children do not survive past early childhood due to complications from this devastating condition.

How it has affected us

Earlier this year our beautiful boy, Angus, was diagnosed with Creld1. Since Angus was 6 months old, he has suffered from seizures ranging from fairly mild to very severe resulting in a coma. This has led to countless hospital trips, endless tests, but no answers or medicine that could help.

Finding out about his diagnosis was extremely tough and scary. We don’t know what the future holds for him, but we do know we’ll do anything we can to help him, and every little warrior, get the funding they need to kickstart ground-breaking research into this rare condition.

Angus is the bravest little boy. He has suffered many setbacks and daily agony, but he is so full of joy, and we owe it to him and to the other Creld1 warriors to find proper treatment.

Why We Need Your Support

Currently, there is a significant lack of research funding dedicated to understanding Creld1 and finding effective treatments. Families impacted by this disorder face an overwhelming emotional burden, and the need for breakthroughs in research is urgent. By supporting Oli’s marathon journey, you will be directly contributing to the efforts of Creld1 Warriors to fund critical research, raise awareness, and provide support to affected families.

Our Goal

Together, we aim to raise £100,000 to support groundbreaking research and improve the lives of children with Creld1. With your help, we can make a difference in their lives and provide hope to families navigating this difficult journey.

The pain of running all seven marathons will end after a week or so (hopefully!), but the pain of the Creld1 warriors won’t end until proper research is done.

Please see more information on Creld1 by visiting the website

https://www.creld1.com

Thank you for your generosity and support. This is a massive challenge for Oli, he will be running 26 miles everyday for a week, that is 182 miles in total. Let's make every mile count for the Creld1 warriors!

Every donation counts no matter how big or small and we are so grateful. The money will go towards trying to find a cure for the Creld1 gene mutation. This will be through the works of Dr Felix Chan from Aston University/ Felix Chan Lab who will build upon the research from NIH and Yale School of Medicine, and will help us gather biopsies from our Clred1 warriors.

Thank you for reading this far

Love Sophie, Oli and Angus xx