Thanks for taking the time to visit my JustGiving page.

My name's Chris, and I'm running the London Marathon for the MED13L Foundation, a charity that's very close to my heart. If you have a few moments to read on, I'll tell you why.

In 2017 my son, Henry, who wasn't even a year old at the time, kept being admitted to hospital for reoccurring bouts of pneumonia. It was an anxious time for our family, as there wasn't a clear explanation for why Henry kept getting so poorly.

After some discussion, Pinderfields hospital in Wakefield decided to do some genetic screening to see if they could identify the underlying causes. When the results came back, the consultant told us that Henry had a diagnosis of MED13L.
Having never heard of MED13L before then, we had so many questions and so much to learn - it was a lot to take in.

We know now that MED13L is a rare genetic condition that keeps the affected gene from working as it should and interferes with the growth of the brain and heart. MED13L affects each individual differently, but many children and adults with MED13L have intellectual disabilities, speech impairments, and differences in facial features.

Henry is now 4 years old, and every day he inspires us. Watching Henry navigate everyday life and relationships with delays in his development and limited speech & language will never stop amazing us. Henry is an absolute delight, he's a happy boy who loves visiting the local farm and feeding the animals, he loves technology and thoroughly enjoys going to school. His smile lights up any room!

Whilst we understand a lot more now than we did a few years ago, there's still a lot we don't know about MED13L. This is because rare genetic conditions have limited funding for the research needed to support those affected better.

One organisation working hard to change that is the MED13L Foundation. The MED13L Foundation is a partnership of leading scientists, doctors, and families determined to accelerate the science of genetic changes related to MED13L.

The MED13L Foundation believes the only way yo make meaningful advances is to do it together. Our families know the steps we have taken on our journey and how our lives have been affected. Scientists know how to transform that knowledge into the most cutting edge research. Together we will drive science forward.

Knowing that the MED13L Foundation is working to make a difference for children and adults like Henry, I want to do what I can to support them as an organisation. I've always been a keen runner, although never anything more than half a marathon until now! Earlier this year, I decided to run the London Marathon to raise money to fund research and better support Henry and other neurodivergent children like him.

Your donation will help fund research into rare genetic changes and their impact, which will be used to inform better support and care for affected people.

Henry is my whole world, and I truly appreciate your donation.