Abigail in bid to beat rare illness

Abigail Lavington, 11, is one of a handful across the UK to have juvenile dermatomyositis – a condition similar to arthritis in the young – and is now preparing to take part in a major new study to improve treatment for sufferers.

The condition first hit Abigail, who is preparing to enter first year at Dunbar Grammar school, at the age of five.

"She was getting very emotional and had basically gone from a fit, energetic child to someone who couldn't get dressed or walk any distance without being in pain," said her mother Leanne, 31.

"We went to the GP and were told it was growing pains, and it took me about six weeks to finally persuade them something more serious was wrong."

It was at that stage she was diagnosed with the illness, and medics said it was so rare no doctor would reasonably have been able to spot the symptoms. She was placed on a course of steroids and eventually the condition eased and she was able to go back to normality.

But disaster struck at the beginning of this year when the familiar symptoms returned; rashes across the whole body, reddening of skin and aching of the bones to the point that she lost all physical independence.

"When she was five and still learning to do some things it wasn't as bad, but when it affects an eleven-year-old girl it is a completely different story," Ms Lavington said.

"It had come back far more aggressively and she was in a wheelchair and it took her a lot longer to get back to form."

Fortunately the treatment has again beaten back the disease to the stage she is preparing for school and managed to perform ballet dancing. But if it does strike again steroids cannot be relied upon forever, and her immune system is very weak as a result, making her prone to infection.

"I could get a call saying she's got an infection and needs to go into hospital for a few days," she added.

"It's things like that which made me sign up to the trial. I didn't have a moment's hesitation, and I can only hope it helps her. Because it's so rare there's no real telling what will happen. We just need to get on with it and wait and see.

"She's incredibly optimistic and faces up to everything. She was determined to get back to school and catch up."

The Dunbar schoolgirl is preparing to take part in the 500,000 trial at the Sick Kids Hospital which could change the future of medicine for her and other sufferers.

Dr Joyce Davidson, the paediatric rheumatologist at the Sick Kids who is running the trial, has worked with Abigail since she was diagnosed.

One of the trial's aims is to move away from reliance on steroids as treatment for the condition

She said: "As a result of early-onset arthritis children develop growth abnormalities, joint damage and osteopenia.

"This means they are at greater risk of developing osteoporosis in later life and are at increased risk of fractures, particularly vertebral collapse.

"We hope that our trial will lead to the production of proper guidelines and to better treatment for children with arthritis and other rheumatic diseases."