Sick Kids Awards: Nomination for Aine McDermott

The prospect of spending every night in hospital for a year would bring most adults to tears, let alone a five-year-old child.

Yet little Aine McDermott, who is just one of 60 people in Britain diagnosed with a rare disorder of the autonomic nervous system, has taken the experience in her stride despite her parents knowing even a short nap could be potentially fatal.

The Penicuik youngster suffers from a condition known as congenital central hypoventilation syndrome (CCHS).

The disorder means her oxygen levels drop dramatically when she nods off, requiring her to sleep with a ventilator at night to avoid the risk of death.

Aine is not expected to return home permanently from the Sick Kids Hospital in Sciennes until close to Christmas.

The fact she has never once cried despite being left alone each night has so inspired mother Leah Farrer, 37, that she has nominated her daughter for the inaugural Sick Kids Heroes awards.

The primary one student is in the “patient who has filled us with admiration” category.

The awards, recognising selfless staff, outstanding supporters and brave patients, coincide with the 20th anniversary of the Sick Kids Friends Foundation. And such has been the impression made by Aine that she has received nine other award nominations.

Leah said her daughter had spent the first three weeks of her stay in the hospital’s intensive care unit after being admitted on December 28.

The mother-of-five said: “We had decided on the off chance to take her to our local GP because she was sleeping so much, she was unusually tired.

“Aine now has to sleep with a mask at night-time. When she comes home she has to get a care package set up because she needs to have an overnight carer sit with her in our house.

“We’re waiting for the funding for that to come through. It means she’s going to be stuck in hospital until that happens.”

The Strathesk Primary pupil has already missed a large chunk of her first full year of school, but Leah said her daughter had made herself at home on the hospital ward.

She said: “Aine never complains. She just gets on with it and has accepted that until we can get babysitters she will have to sleep at hospital.

“It’s very hard for us all, but her brilliant sociable nature makes it easier. I believe she deserves to win an award as she really is special and always has a smile.”

Award nominations must be submitted by April 11. They can be made at www.edinburghsickkids.org/events/nominate, by phoning 0131 668 4949 or by submitting the attached coupon.