Bideford’s Christmas lights will be switched on by Emily Carey, five, who suffers from a rare and unnamed genetic condition.
A young girl with a genetic condition so rare it doesn’t have a name will be doing the honours of turning on Bideford’s Christmas lights.
Emily Carey, five, suffers complex epilepsy, has to be fed through a tube and carries oxygen around with her at all times.
The Pathfield School pupil spends several weeks a year at Children’s Hospice South West, where she was nominated by her key worker to turn on the lights on Sunday, December 6.
Because her condition is so rare, her family do not know how many Christmases they will spend together, and said they will ‘treasure this memory forever’.
Mum Becky Carey, 40, said: “Christmas is a big thing in our house as Emily has seven brothers and sisters.
“They will all be there and it will be such a brilliant memory for all of the kids to have together.
“Emily loves Christmas and all of the colourful lights, we just hope she will be well enough as she has been quite ill recently.”
Emily has been in and out of hospital since she was five weeks old, but has only recently been diagnosed with the unnamed condition.
Becky said: “I could feel something wasn’t right in my pregnancy; it wasn’t like the others.”
At five weeks old Emily began to have seizures, and often had to be resuscitated afterwards.
Her dad Phil Carey, 36, said Emily was always ‘quite happy and smiley’.
“But this year she has been quite ill and she’s probably been in hospital about 40 per cent of the year,” he said.
See Emily turn on the lights at 5pm on Bideford Quay as part of an afternoon of festive fun on Sunday, December 6.
You can find out more about Bideford’s Christmas light switch on in our special Christmas section here.