Mum claims daughter could die every time she watches Peppa Pig or sleeps due to rare condition
A mum has explained how her six-year-old daughter could die while doing something as simple as watching Peppa Pig as a result of a rare condition.
Plopping a child in front of the TV screen is usually a handy way to keep them distracted while parents get some necessary errands or housework done, but for Star and Andrew Bowyer, that's exactly the kind of time they need to keep a close eye on their daughter, Sadie.
The six-year-old has to be monitored around the clock, and has to be hooked up to a ventilator every night to avoid a fatal incident.
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Just weeks after she was born, Sadie was diagnosed with Congenital Central Hypoventilation Syndrome; a condition which means her body doesn't breathe automatically, like most of us are used to, when she sleeps or concentrates too hard on something.
Star has explained that she had a healthy pregnancy, but the newborn had to be resuscitated and was rushed off to intensive care for six months right after she was born.
"When she was born, she was whisked away from me and she was in respiratory distress," Star said. "That was our first indication that anything was wrong.
"They said she was healthy and it was probably a respiratory infection or she swallowed some fluid. They did every genetic test going and they couldn't find anything wrong with her... She was breathing fine when she was awake but she stopped breathing when she went to sleep."
Star gave Peppa Pig as an example of something which might prove fatal to Sadie, with the show proving so captivating to the youngster that it could cause her to forget to breathe.
"Every single night, Sadie could die within minutes. Her brain can forget to breathe and send signals for the heart to beat," Star explained.
"If she concentrates really hard, she'll stop breathing. If she's concentrating really hard on Peppa Pig, she'll stop breathing.
"She starts turning blue, she gets tired from carbon monoxide retention and she'll go very still. I immediately put her on the ventilator."
Following her diagnosis, when she was just two months old, Star had a tracheotomy to help her breathe. But as she's grown older, the young girl has become conscious of the feature.
Star explained: "She went to the park and some kids were pointing at her tracheotomy and calling her ugly so she came running over and asked me to take it out but then they were pointing at the hole in her neck and calling her disgusting."
Sadie can't be left unattended at any point during the day, with her parents having to be particularly careful on long car journeys or if they settle down to watch a film.
The family has installed hospital grade equipment in Sadie's bedroom to keep her alive, and are now fundraising £160,000 to pay for her to have Phrenic Nerve Pacers fitted, which would allow her to breathe without the tracheotomy.
"It could change her life," Star said of the operation. "It wouldn't matter if she fell asleep.
"She could stop breathing in her GCSE exams so we'd have to put her in a room on her own with a ventilator which is embarrassing. The pacers would help her be like any other kid."
Star described her daughter as a 'spitfire' with a 'great sense of humour', and expressed her hopes that she will soon be able to get the independence she deserves.
You can donate to Sadie's fundraiser here.
Emily Brown