'Every time she falls asleep, she might die'

Sadie breathes via a tube which comes out of a hole in her neck and which is linked to a ventilator

Parents of a girl with a rare breathing condition which means she could die when asleep have fundraised for life-changing surgery.

Six-year-old Sadie has Congenital Central Hypoventilation Syndrome (CCHS) which affects how her nervous system manages her breathing.

Her parents, from Birmingham, said a battery-powered system put in her chest will help stimulate breathing.

They hope it will give their daughter more independence.

"I never really sleep. Sadie can't really be left unattended at any point," her mother Star said.

"Even in the day there is all the risk of if she fell asleep, if she was knocked unconscious, she would stop breathing, if she fainted or whatever so she can never not have eyes on her."

Sadie cannot breathe on her own when asleep and so she relies on a ventilator, breathing via a tube through a hole in her neck. The machine only has eight hours of battery life.

Sadie's mum Star said she was "excited and scared" about her daughter's upcoming operation

The phrenic nerve pacer Sadie's parents have fundraised for works a little like a cardiac pace maker as it will tell the diaphragm when to move and breathe, her father Andrew said.

"It doesn't fix everything but it makes everything a bit better and the biggest thing is it's setting her up for independence going forward," he added.

Guidance set out by the National Institute for Health and Care Excellence (NICE) does not recommend NHS funding for the issue.

The family, currently living in Redditch, Worcestershire, have raised £33,000 out of £39,000 needed and the surgery, which was supposed to be last month, has been delayed until 19 April due to complications with Sadie's cardiac pacemaker.

The money raised is not only to help pay for the surgery, but for accommodation near her hospital, as the family mainly now live in Dubai and rent their house in Birmingham out.

Star said getting this surgery for Sadie, "is a journey worth while" and she was "excited and scared in equal measure" about the operation.

"It's a really significant operation that she's undertaking so you're in knots," Andrew added.