Toddler who could die anytime he falls asleep desperate for new life-saving mask to help him breathe

Little Charlie Wagstaff needs to wear a mask attached to a ventilator when he goes to sleep, due to a genetic disorder called Congenital Central Hypoventilation (CCH) – which only affects 1,000 people worldwide.

In fact, the toddler is just one of 70 people who live with it in the UK.

But the mask he sleeps in is starting to stunt the development of Charlie's face, so his parents want to fly to Denmark where they can get a bespoke mask made.

CCH affects the central nervous system which controls our breathing, heart rate and blood pressure.

When Charlie goes to sleep, his nervous system fails to regulate his breathing properly and doesn't respond to increased carbon dioxide levels that would automatically stimulate breath in someone who doesn't have the condition.

Charlie spent the first four months of his life in hospital, and today has to have his oxygen and carbon dioxide levels closely monitored as he sleeps – which requires being watched over by carers every night.

Pub landlords Angie Ryan and Steve Pratt from Denmead, Hants, are helping to raise money for the family with music events at their pub, the Fox and Hounds in Denmead, where Charlie's parents, Sophie and Chris, used to be regulars.

"We were heartbroken to hear of Charlie's condition and can only imagine the struggles his Mum and Dad have been through," Angie, 55, wrote on a crowdfunding page.

"It is so rare that only 1,000 people in the world have been diagnosed with this lifelong and life-threatening condition, which has completely turned his mum and dad's life around.

"Charlie spent four months in hospital before coming home with lots of equipment and carers who watch over him every night.

"He wears a mask attached to a ventilator every time he goes to sleep – his life support machine and his oxygen and carbon dioxide levels also have to be closely monitored to keep him safe.

"Charlie's mask is starting to cause him facial deformities, so any money raised will go towards a bespoke mask which will hopefully allow his face to develop properly.

"They will need to travel to Denmark for the bespoke fitting."

Steve, also 55, said: "I was really upset hearing about what (Charlie) goes through and wanted to do something.

"I asked if there was anything he needed and his parents said he needs a new mask for breathing at night."

So far, £2,000 has been raised for the little boy.

Steve performs tribute acts and is going to host a Neil Diamond night at the pub on 1 December.

He added: "‘The community always get involved when we do our events.

"People are so generous with donating raffle prizes and we have sold nearly every ticket. I think people like seeing the money going to worthy families."



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