We are a charity, set-up by parents. We have an “end goal”. We need your support to create a better life for our children. Read our most recent update to understand more about us, and our project… Sign up to get the latest KMB updates and news
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As you know we have an ambitious plan to fund, develop and bring a new CCHS treatment to market with a 5 year accelerated plan backed by over 130 doctors, scientists and medical professionals. Thank you so much for contributing to this. Why are we so relentless? Because for children like Casper, Beau and Tiger-Lily (that’s in Sussex alone!) and the …
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We are a charity, set-up by parents. We have an “end goal”. We need your support to create a better life for our children. Read our most recent update to understand more about us, and our project… Open in Browser Sign up to get the latest KMB updates and news
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It is 10.30am and Casper Oakley-Roberts smiles as his parents finish feeding him spoonfuls of apple purée and prepare for his first nap of the day.
They carry him into his room and put him down gently. Then one of them holds his hands out of the way as they strap a ventilation mask to his face.
Casper, who turned one this month, is one of 1,500 people in the world with congenital central hypoventilation syndrome (CCHS), a neurological condition that means he can suffocate at any time if he falls asleep, concentrates too hard or even just gets upset. There is no cure or treatment, beyond artificial life support.
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Hi everyone, James here. Today I am really excited to announce the launch of our Podcast! If you want to follow the story of children born with a rare disease, no cure, and no treatment except artificial life support through to what I genuinely believe will be gaining a life changing and saving treatment, then listen and subscribe!
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