Nurses walk in Worthing for Hove child with rare illness

They will be raising money for Keep Me Breathing, which helps people with congenital central hypoventilation syndrome (CCHS). Fewer than 2,000 people in the world suffer from the disease, including the grandson of one of the fundraisers.

Maria Swift, one of the nurses who organised the walk, said: “I wanted to do a fundraising event so that children like my wonderful grandson Casper with CCHS can breathe on their own.

“This will change the lives of thousands of children by breathing for them while asleep.”

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Casper’s parents Stephanie Roberts and James Oakley, both 33, set up Keep Me Breathing to help create a “breathing pacemaker”.

Casper with parents Stephanie and James and brother Max (Image: Stephanie Roberts)

Currently those with CCHS need mechanical ventilation when sleeping as they lose control of their breathing while asleep.

The nurses will be walking from The Perch in Lancing to The Perch on Worthing Pier on Saturday at 10am.

Those wishing to support the fundraising can donate on the group’s Go Fund Me page.