Pioneering Sussex charity for children with a rare breathing condition calls for support

Tickets are on sale now for a Spectacular Gala Ball being held on 27th April at Findon Place for Sussex Charity Keep Me Breathing, to reach its first massive fundraising milestone.Set up just a year ago by the Oakley family from Hove whose son Casper was diagnosed with very rare breathing condition, the charity has a big mission - to build The Breathing Pacemaker.
By Gayle HudsonContributor
Published 20th Mar 2024, 17:02 GMT
Updated 20th Mar 2024, 17:04 GMT
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Children born with CCHS face a life-time on a ventilator to keep them alive with the added complication of needing constant monitoring by parents and carers every night. Most patients are also living with a tracheostomy which has a huge impact on their quality of life.

To change all this, the charity has a group of engineers and scientists in Cambridge working around the clock to build a prototype of the new Breathing Pacemaker which will transform the lives of children with this condition, giving them unimaginable independence and freedom.

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To help them reach their first £500,000 fundraising goal to develop the prototype, Findon Place is hosting a Spectacular Leap Year Gala Ball sponsored by NFU and Wiston Estate on Saturday 27th April 2024, with all ticket sales to Keep Me Breathing’s Pacemaker project.

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Casper and BeauCasper and Beau
Casper and Beau

Tickets are on sale now via this link The Leap Year Ball

Join us for an unforgettable and heartwarming evening in Findon Place, a beautiful Private Estate nestled in the South Downs National Park. The event starts with Welcome Drinks followed by a Gastro Feast, Entertainment with Live Music, Auctions, special guest appearances and much more.

“When Casper was born and struggled to breathe our world changed. His rare genetic condition was eventually diagnosed by specialist experts at Great Ormond Street Hospital where he underwent genetic testing. We are forever grateful for the medical support we receive but we want Casper and all children with CCHS to live without artificial life support. A cardiac pacemaker already exists and there is a wealth of technology that we are harnessing to make The Breathing Pacemaker a reality. We won’t rest until our mission is complete and we can help thousands of families around the world struggling with this devastating condition - and with your help we can,” explained James Oakley, Founder of Keep Me Breathing and dad to Casper.

Please join us at this fabulous event, learn more about our work from experts attending and importantly, please come and enjoy a truly magical evening.

[email protected]

Tel: 07710 464151

Related topics:SussexHove