Support children who can't breathe while asleep

Support children who can’t breathe while asleep, like our second son Beau. He is 24/7 ventilated via tracheostomy, and will be mechanically ventilated for his entire life due to this incredibly rare condition.

We'd love our Christmas Tree customers and clients to donate to Keep Me Breathing, this Festive period.

WHAT IS CCHS & KEEP ME BREATHING?

Congenital Central Hypoventilation Syndrome (CCHS) is an extremely rare genetic condition which causes children like Beau & Casper to stop breathing the moment they fall asleep. 2,500 diagnosed cases worldwide, only 150 in the UK.

Beau is from Arundel, he was born at 29.5 weeks (unrelated) and suffers from CCHS and Hirschsprung's disease. Due to Beau's prematurity, he is 24/7 ventilated via tracheostomy, requiring 24/7 specialist nurse-level care, including 12-hour awake night care in his bedroom.

Casper is from Hove and was born with the most complex case of Neuroblastoma (a childhood cancer) Great Ormond Street Hospital has ever seen. Casper, having already undergone cancer treatment at a young age, due to CCHS he is mask ventilated every time he drifts off to sleep, he too requires overnight trained care.

Both boys, born in 2021 and only 2 months apart in age, met in Brighton children's hospital. Both diagnosed with CCHS, they require mechanical ventilation when asleep for the rest of their lives, due to this rare genetic condition. There is no cure.

We are a high-impact charity based in Brighton & Arundel. We are developing 'The Breathing Pacemaker'.

The technology exists. The investment does not... Yet. We’re changing that.