All Ella Murphy wants for Christmas is a hug from her mum. But that can never happen – because even the gentlest touch is too excruciatingly painful.
The 11-year-old suffers from Complex Regional Pain Disorder, which affects one in 4,000 people.
Even the slightest stroke of the sore area, which can change at any time, causes the schoolgirl to have an horrendous burning sensation.
At the moment the pain is in her ankles and so bad she needs a wheelchair.
Mum Charlotte, 44, and dad Shaun, 45, also have to lift her out of bed every morning.
Charlotte told her local paper: "The pain can come on because she has knocked herself or it can develop by itself or through stress.
"She has had it in a variety of places including her hips, shoulder, knees, and currently it is in her ankles so she is using crutches and a wheelchair to get around.
"The pain can last from days and weeks to months and the only way to get through it is to make sure she keeps moving, as if she doesn't it can spread.
"It's a horrible condition because you just want to be able to make it better for your child and nurture them but when she has pain in her upper body I can't touch her.
"I just want to take her pain away but even a hug can make it feel worse for her.
"She is currently using crutches and a wheelchair to get around as the pain is in her ankles so luckily I can cuddle her at the moment but that can change on a regular basis.
"But as soon as the pain is in her arm or anywhere like that, we have to be so careful."
Ella, who lives near Yeovil, Somerset, was a healthy seven-year-old when she got the disorder, which affects the nervous system.
She woke up in the middle of the night and was unable to move her right arm. It was initially diagnosed as a fracture but was then revealed to be caused by a growth plate and was treated with physiotherapy.
Her mum said: "It is hoped that if the condition is diagnosed and treated early that children can grow out of it."