Video report by Sarah Rogers
A young girl from Darwen has to have CPR performed on her by her parents on almost a weekly basis to stay alive. Her rare condition means a tantrum in which she holds her breath could cause a cardiac arrest.
Charlotte Drinkwater, known as Charlie, is just three-and-a-half years old but she has a list of complicated medical issues including spina bifida and a rare condition called Chiari malformation. and has already undergone 13 surgeries in her life.
But despite the trauma little Charlie goes through, she's a happy, chatty and bubbly little girl. Her family are now raising money for Royal Manchester Children's Hospital, where Charlie has been treated for her conditions since she was born. She's most recently taken part in a lantern walk. Find out more about her fundraising here.
Her parents, Rebecca Barrow and Andrew Drinkwater, say they have to always be alert and ready to perform CPR on their little girl.
“If she has a tantrum she often breath holds and because of the neurological makeup of her brain, her breathing instinct doesn’t kick in like it should, so she goes into respiratory arrest. These can happen a number of times a day but the CPR is probably once every week or two," Rebecca said.
Mostly we can bring her round on our own, but we instinctively know now when it’s going to be a 999 call and we get the paramedics out.
Rebecca said that Charlie will quickly bounce back after losing consciousness, she's hopeful she might grow out of it when she gets older.