Toddler with rare disorder could die from falling asleep

November 9, 2018  10:26

A heartbreaking photo of a one-year-old with a rare condition that means he could die every time he falls asleep has helped his parents smash their fundraising target for a bespoke mask to help him breathe during the night.

Charlie Wagstaff, from Hampshire, suffers from the genetic syndrome Congenital Central Hypoventilation, which affects just 1,000 people worldwide and 70 in the UK.

The condition impacts how the central nervous system controls breathing, forcing the one-year-old to wear a mask attached to a ventilator every time he nods off.

But his current mask is stunting the development of his face, leaving him with facial deformities.

Charlie's parents have already exceeded their £1,000 target for a trip to Denmark where doctors will develop a bespoke breathing mash that will let his face develop normally.
CCH means Charlie's central nervous system fails to properly regulate his breathing when he falls asleep.

This means he does not respond to increased carbon dioxide levels that would stimulate someone a healthy person to draw in a breath.

Ever since he was finally sent home from hospital at four months old, Charlie has had to have his oxygen and carbon dioxide levels closely monitored by carers every night.

Landlords Angie Ryan and Steve Pratt, both 55, from Denmead, Hampshire, set up a fundraising page for Charlie's parents, who used to be regulars at their pub Fox and Hounds.

On a Justgiving page for Charlie, Ms Ryan wrote: 'We were heartbroken to hear of Charlie's condition and can only imagine the struggles his mum and dad have been through.

'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'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.'

Mr Pratt went on to explain the first time he saw Charlie when his parents brought the youngster to the pub.

'He had all these tubes and equipment and they explained he had spent months in hospital' he said.

'I was really upset hearing about what he 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.'

Mr Pratt performs tribute acts and will host a Neil Diamond night at the pub on December 1 to continue to raise funds.

'The community always get involved when we do our events,' he said.

'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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