Condition means Aine could die in her sleep

A medical team have to visit the house each night at 9pm to monitor Aine and herlp her breathe using a ventilator and other medical equipment. Picture: Greg Macvean
A medical team have to visit the house each night at 9pm to monitor Aine and herlp her breathe using a ventilator and other medical equipment. Picture: Greg Macvean
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Looking at six-year-old Aine McDermott you’d think she was a normal little girl who likes playing with her friends, going to school and listening to her favourite boyband, One Direction.

But this plucky “girly girl” has an extraordinary routine every evening – after getting into her pink bed in her pink room, she plugs herself into a machine that keeps her alive while she’s sleeping.

Aine, from Penicuik, has a rare condition called Congenital Central Hypoventilation Syndrome (CCHS), which affects her central nervous system and causes her to stop breathing when she’s asleep.

The schoolgirl was born with the life-threatening and incurable condition which affects only one in every 200,000 children.

She was first admitted to hospital when she was six weeks old but doctors were stumped and sent the family home without a diagnosis.

It wasn’t until Boxing Day in 2012 when the then five-year-old was rushed to Edinburgh Sick Kids Hospital and six subsequent weeks of teststhat doctors finally diagnosed the condition.

Mum Leah Forbes, 38, said: “It was a scary time. She was in intensive care with a life support machine ventilator – they did not know what was wrong with her,” she explained. “It was actually a blessing to get a diagnosis because it was more scary not knowing.”

The Strathesk Primary pupil was allowed to return to school in summer 2013, but had to go back to the Sick Kids’ high dependency unit every night until funding for home treatment was allocated in December. The family, including Ms Forbes’ partner, Tommy, 38, and Aine’s siblings, Finn, 12, Ruari, ten, Conal, eight and Erin, three, also moved house so Aine could have her own en-suite bedroom. She now spends every night wearing an oxygen mask and being monitored by a nurse to make sure she does not pull it off in her sleep.

But despite this she has not missed a day of school since returning full time last October and still tries to be as ‘normal’ as possible.

Ms Forbes praised her daughter for being so brave.

“She’s never not been unwell but she likes going swimming and she’s a really girly girl. She likes handbags and One Direction – we have got tickets to go to see them in a few weeks,” she said. “She does not seem to be fazed and I think that’s what captures people – she just gets on with it.

Strathesk Primary School headteacher, Vicki Donaldson, said Aine is a “very popular and brave girl” who had settled back into school well.

“Considering the difficulties she had she does extremely well and is making good progress in school – she does not let anything stand in her way,” she said.

The family raised more than £6000 for the Sick Kids Friends Foundation, in the KiltWalk last year and hope to do the same this year.

To sponsor Team Aine visit www.uk.virginmoneygiving.com/team/aine2014