Bethany Brittan can now do ballet
Calculating risk is something every parent must learn to do. But for one family even the simplest decisions can have dramatic effects.
Twelve year old Bethany Britton is a normal fun loving youngster. Like all girls her age she loves parties, discos, music and shopping.
Each outing she took had to be planned with meticulous care weeks before.
The Brighton schoolgirl sufferers from Juvenile Idiopathic Arthritis and although she is now in a period of remission she is well aware of the dangers of doing too much.
Limitations
It is two years since her last "flare-up", but she knows her limits and is well aware that one over exertion could leave her crippled with pain and in need of intensive physiotherapy.
But she stressed that Bethany is no victim and is determined to use disease-free time to the best advantage and make the most of her life.
This September Bethany went to a mainstream secondary school and, apart from missing a lesson a day for physiotherapy, she is managing to keep up with her school friends and enjoy life in the big school - something her parents never dreamed possible in the bleak days of her last "flare-up".
Wheelchair
Then her rare condition left her confined to a wheelchair and in agonising pain. Her joints were so swollen and sore that even holding hands with her sister Ruth, aged 10, was too painful to bear.
"The only lesson she can't make is RE once a week because they hold it in a class room on the seventh floor and that just takes too much out of her.
"We were keen for her to take part in whatever she could do, but that does not include doing gym, because that just emphasizes the sort of things she can't do, not what she can.
"As a parent of a child with arthritis you have to learn which activities cause problems and take small or serious risks.
"Like many other families, we wanted our children to have fun, to join in, and to try new things, but this involved taking calculated risks.
"Living like this is emotionally draining, and the next day when the child hurts, it is easy to doubt your decisions."
Naughty but nice
She explained that even when her daughter is naughty she rejoices - because it means the girl has enough energy to be normal.
"When she was ill she used to retreat into herself. She was so quiet and listless she couldn't even play with Ruth.
"They used to just sit together on the sofa holding hands, but even that hurt Bethany because her hands were so sore and swollen.
"She can be quite a handful and it is good seeing she has that energy again."
Although one in 1,000 children in Britain have some form of arthritis many still regard it as simply something old people suffer from.
Severe disease
Bethany sufferers from one of the more severe forms of the disease. When she is at her worst she has badly swollen joints, liver problems and even needs blood transfusions.
As a baby Bethany was quick to walk, but it soon became clear to her parents that all was not well.
She lost interest in mobility and it became clear that she was in acute pain.
But despite repeated visits to medics a diagnosis was slow, different and varied symptoms made it more difficult to pinpoint.
When her condition was finally diagnosed the family were distraught.
At the age of just four she was wearing full arm and leg splints and sleeping every four hours and the cuddles that youngsters her age take for granted were too painful to endure.
She woke every day crying in pain and only lengthy baths and intensive physiotherapy seemed to relieve her agony.
Determination
But her family are determined that they will learn to live with the illness and not allow it to wreck their lives, ensuring that Bethany and Ruth live as normal a life as possible.
Two years ago Bethany was in too much pain even to tie her own hair back and experiment with new styles, but her remission has given her a new lease of life.
Bethany has done ballet, been a bridesmaid, played the clarinet and even played hockey at school.
She knows that these are not things she can do during her "flare-ups", but is determined to pack as much as possible into the good times.
Dr Britton said: "I think you should do as much as you can, but you must be sure not to do too much."
Positive outlook
The future path of Bethany's illness is not clear, although all the signs point to a positive outcome as she continues to thrive.
A spokeswoman for the Arthritis Research Campaign explained that arthritis was often mistakenly seen as a disease simply affecting the elderly.
She said medics are spending a lot of time researching the disease and that the future is much brighter for youngsters today.
"Twenty years ago someone suffering from this would probably have ended up in a wheelchair, now there is lots that can be done to help sufferers."
Clinics have been set up around the country to help children cope with their arthritis - offering them practical advice on coping with their drugs; drinking and driving while on medication and advice on sex.