Published2 hours agoShareclose panelShare pageCopy linkAbout sharingImage source, FamilyBy Megan Jones & Maisie OlahBBC Radio WMParents 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.”She has to be watched 24/7,” Sadie’s mother Star said.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.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.Guidance set out by the National Institute for Health and Care Excellence (NICE) does not recommend NHS funding for the issue.”Every time our beautiful daughter falls asleep she might die,” Star said.The family have currently raised £33,000 our of £39,000 needed and surgery, which was supposed to be last month, has been delayed until 19 April due to complications with her 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”.Follow BBC West Midlands on Facebook, Twitter and Instagram. Send your story ideas to: newsonline.westmidlands@bbc.co.ukMore on this storyChildren home from intensive care22 December 2010Rare breathing disorder baby home2 December 2011Related Internet LinksNICE – The National Institute for Health and Care ExcellenceCCHS UK – A CCHS Support CharityNHS EnglandThe BBC is not responsible for the content of external sites.