The beautiful baby in this photograph is Casper, with his brother Max.

Casper has CCHS (Congenital Central Hyperventilation Syndrome) - a rare condition affecting only around 1000 people worldwide. In CCHS, the normal safeguards, used by the autonomic nervous system to control breathing, are impaired. When breathing is shallow while asleep, the levels of carbon dioxide in the blood increase, which stimulates a breath. In CCHS, this stimulus does not occur and breathing can stop. Casper cannot sleep without artificial ventilation.

There is an urgent need for new treatment so Casper’s and others have set up the charity “Keep Me Breathing.” The aim of the charity is to fund the development of innovative solutions and to build a Breathing Pacemaker. This will be life changing and lifesaving.

Keep Me Breathing needs support to make the world of difference to the lives of those with CCHS. For more information please visit keepmebreathing.com

There is no cure for CCHS. But we are making progress towards one every single day. Backed by over 110 medical professionals. Join us.

In order to raise money, I will be running the Brighton Marathon in April 2025. This 26.2 mile event will take me from the city to the coast of Brighton and Hove.

Please sponsor me and support Keep Me Breathing. Every penny raised will change and save the lives of children with CCHS