Dancer depends on life support machine to get her through the night

Fourteen-year-old Annalise Spence is dependent on a life support machine to see her through every night after being born with a rare disorder that stops the body automatically deep breathing when asleep.

Annalise's parents Annamarie and John, 35, knew something was wrong the moment she was born in the former Queen Mother's maternity hospital at Yorkhill.

But they are determined she leads as normal a life as possible and said they would 'never hold her back.'

The family is now hoping she can join her dance school in the trip of a lifetime to perform in Las Vegas, with her mum saying 'dancing is her life.'

She was just three weeks old when the family, from Milton, was told Annalise had been born with Congenital Central Hypoventilation Syndrome (CCHS) - a rare disorder of the autonomic nervous system.

It means she doesn't take deep breaths when asleep and leads to a shortage of oxygen and build-up of carbon monoxide in the blood, which can be fatal.

Annamarie, 33, said: "We were told she had a collapsed lung when she was born and the doctors initially thought that was to blame for her shallow breathing.

"They did more tests and said something wasn't right. She was struggling to breathe on her own.

"She was quite pale and didn't make any noise."

Doctors fitted an apnea monitor to measure her breathing and it showed she kept falling into a deep sleep.

They ruled out muscular dystrophy after asking Annamarie about the family's medical history, she said.

It wasn't until a visiting consultant who had seen another young girl with CCHS suggested the disorder that the family were told what it was.

"She spent six months in the special care baby unit - she was the biggest baby they had in there!," her mum said.

"She was fitted with a tracheotomy and she had that up until she was seven."

After a few months, Annalise was moved to Yorkhill children's hospital and her parents were given training on signs to look out for and how to help her if her breathing slowed.

She was allowed home when she was 10 months old and the family, who live in Westray Street, was told the best thing to do was to keep her active as her breathing slows otherwise.

Annamarie said: "She breathes ok during the day because she's active. The doctors said the best thing was to keep her active and get her to do dancing.

"When she is using other parts of her body it keeps the oxygen flowing through."

The John Paul Academy pupil has been dancing since she was six years old and "it's her life," her mum said.

"She goes to Divas Dance Academy in Maryhill and she loves it," she added.

"She does all kinds of dancing, a bit of everything, disco, ballet, hip hop."

Annamarie said her daughter lives as normal a life as possible but admits she misses out on things like sleepovers at her friends' homes.

"She sees things like that and she can't take part," she said.

"She is on life support every single night. If she went for a nap she'd have to be on the machine otherwise she would hyperventilate and not exhale the CO2."

She said she loves River City but can't sit through an hour-long episode without being on the ventilator.

She said her younger sister Alicia, 7, is very protective of her and alerts them if she thinks Annalise's breathing is slowing or if she sits still for too long.

Despite her condition, Annalise can travel and fly on planes. The family - with brothers Kieran, 16, and Aidan, 10 - have been on holiday to Florida, Spain and Tenerife.

Their hope is Annalise - with her mum - can join Divas Dance on a trip of a lifetime to perform on stage in Las Vegas.

The dance school, from Shakespeare Street in Maryhill, has been invited to take part in a Smile Las Vegas show in May next year but needs to raise £20,000 to pay for the trip.

Dance teacher Joanne Gray applied to take part after spotting an advert on Facebook for UK dance schools to take part in shows at the Tommy Wind Theater (CORR) next May 30 and 31.

She said: "I sent in a video of the girls dancing and thought no more about it.

"I got an email back saying they would love to have us on board and that was it.

"I hadn't told the girls because I didn't want to get their hopes up."

Twenty six of the 50 pupils at the dance school will go on the trip but they need to raise the money for travel and accommodation costs.

Joanne, 32, added: "There are 200 young people from across the UK going.

"We all get a certain amount of time on stage and it's up to us whether we do one big production or smaller numbers."

She said parents had already swung into action and were organising a race night, a psychic night and bag packing events.

She said: "We're doing everything we possibly can!"

The school has set up a crowdfunding page on JustGiving.com.

WHAT IS CCHS?

CCHS is a very rare and serious form of central nervous system failure, involving a failure of autonomic control of breathing.

People with the disorder take shallow breaths, especially during sleep, resulting in a shortage of oxygen and a build-up of carbon dioxide in the blood.

Ordinarily, the part of the nervous system that controls involuntary body processes (autonomic nervous system) would react to such an imbalance by stimulating the individual to breathe more deeply or wake up. This reaction is impaired in people with CCHS, and they must be supported with a machine to help them breathe properly