I'm taking part in a big bike race in the New Forest (https://www.ukcyclingevents.co.uk/events/wiggle-new-forest-100-sportive/).
We are trying to raise some funds and more importantly awareness for this wonderful charity CCHS. http://www.cchssupport.co.uk/index.html
I recently attended a charity golf day and was lucky enough to meet a little boy called Finlay who suffers with CCHS. As a dad of two myself, I was moved to tears and blown away by how much Finlay and his wonderful parents have to endure. Even creating this page has made me relive the emotions of that day.
Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep, but may occur in some individuals when they are awake.
There are thought to be over 100 affected families in the UK and we have personally met some of the families.
I hope to raise awareness and help the children affected and because the charity is simply amazing.
Thank you.
Adam Kirby
