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Supporting our son's charity

Our second son, Beau, has a rare genetic condition called Congenital Central Hypoventilation Syndrome (CCHS). Simply this means that when he sleeps, he does not breathe and therefore requires artificial life support. He also suffers from a CCHS-related bowel disease, Hirschsprung’s, and had 13cm of bowel removed at 6 months old. He is currently 24/7 ventilated via tracheostomy.

Steph and James, from Hove, have a little boy called Casper, who was diagnosed with CCHS, following diagnosis of neuroblastoma's, childhood cancer.


Around 2500 people in the world are diagnosed with CCHS hence there has been very little research into the condition and treatments.


The technology to dramatically improve the lives of people with CCHS is there however the funding is not. Because of this, Keep Me Breathing was set-up in January 2023, with 100% of donations going directly towards discovering and developing treatments and cures for CCHS.

As a charity run by 100% donations, we make a donation to Keep Me Breathing from the trees installed, and support with printing and marketing costs.

How you can help us

Hold an event in aid of Keep Me Breathing

Taking part in a sporting event? Support Keep Me Breathing

Contact me

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