Join the Team and help collectively swim 2500 lengths on Sunday 16th April
Swimming Challenge fundraiser
Help swim 2500 lengths on 16th April at Arundel Lido. Swim anything you can, 10, 20, 60, 100 lengths, every length counts. People are encouraged to seek sponsorship, and bring spectators to enjoy food, drinks & entertainment to help boys with a better treatment for the rest of their lives.
Spectate and enjoy amazing food, drink music and raffle.
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.
Beau is from Arundel, he was born at 29.5 weeks (unrelated) and suffers with CCHS and Hirschsprung’s disease. Due to Beau’s prematurity, he is 24/7 ventilated via tracheostomy, requiring 24/7 specialist nurse level care.
Casper is from Hove, and was born with the most complex case of Neuroblastoma (a childhood cancer) Great Ormond Street Hospital have 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.
Keep Me Breathing are a high impact charity based in Brighton & Arundel. 100% of donations go directly towards developing ‘The Breathing Pacemaker’. The technology exists. The investment does not, yet. They’re working to change that.
