When Tom Hutton’s friends play sport he stays on the side lines. Not that the 13-year-old doesn’t like to join in, but as a sufferer of juvenile arthritis he simply isn’t able to.

When he began to get aches and pains last year he and his family put it down to growing pains but since his diagnosis in July they have had to come to terms with the fact he is one of around 12,000 children in the UK suffering from a disease more commonly associated with old age.

For an active teenager arthritis is a particularly cruel blow. Tom, who used to love playing for his local cricket team, can only umpire when his friends play at school. And he can no longer play football with his sports mad 14-year-old brother Liam.

A year ago Tom, who lives in Rawdon, was a normal active schoolboy – but now he has trouble writing, and on a recent trip to the Lakes had to sit down after walking 200 metres.

Before he became ill his family had no knowledge of juvenile arthritis.

His mum Clare said: “We just thought he had growing pains. There is arthritis in the family but they are all old – we had never come across juvenile arthritis before either through the family or through friends.

“I am a nurse and I had never come across it before. Unless you do then you are just not aware of it. A lot of people say to us he can’t have arthritis, he is only a kid.”

Now she is determined to do everything she can to raise awareness of the disease as well as money to support research into an eventual cure. And she is organising a workshop for children with arthritis and their families.

She stressed how much children with the disease suffered and how little awareness and money was around for them. Tom is on a cocktail of drugs to hold the disease at bay.

“It is a incurable disease and is heartbreaking to watch a once active child change into an old man who cannot do PE or any of his out-of-school activities,” Clare said. “He was a member of Rawdon Cricket Club and has had to stop due to the disease.”

His illness, which began gradually with aches and pains, grew increasingly worse, and reached the stage where he couldn’t walk at all and had to be taken to the hospital’s accident and emergency department.

“He just seemed to deteriorate so rapidly,” Clare said. “When he couldn’t do anything it was awful.”

Now he is on a powerful cocktail of drugs, but the treatment itself leads to side effects such as mouth ulcers, stomach upsets and a suppressed immune system.

“Juvenile arthritis is a bit of a roller coaster,” said Clare. “I call it a journey because you have good days and bad days.

“There is no cure for arthritis but they can go into remission, and it is our hope Tom will go into remission and be fine.”

Tom’s diagnosis was given after he was admitted to hospital through A&E, and was initially something of a relief to his family.

“As a nurse I realised they were also testing for malignancy. I was relieved it was arthritis and not leukaemia. I thought thank God it’s only arthritis – but it’s not only arthritis. It isn’t just a pain or an ache, it is actually quite a serious disease.”

Clare has become involved in a charity which helps children and young people with arthritis and she is trying to raise awareness and money. So far she has raised £1,045.

She said: “I have lots of things in the pipeline and volunteers. The main aim was to resurrect the ‘young persons and families group’ in Arthritis Care, they used to run a workshop but lack of funding and volunteers meant workshops stopped.”

But she has now organised a workshop for December 18 at the Leeds Playhouse – an event she feels is desperately needed by the children and families affected by the terrible disease.

The event will feature a speaker from Disability Information, Disability Rights, Disability Policy (DIAL). It will also be attended by staff from the LGI’s rheumatology department, as well as Arthritis Care staff and Arthritis Research staff.

Leeds Rhinos have also promised that one or two players will go along to the event, she said.

Between 350 to 400 invitations have been sent out to families whose children are seen at Leeds General Infirmary – and Clare is keen to publicise the event to people in other areas, such as Ilkley and Bradford, who may not be known to the local hospital.

She said the aim of the event was to offer emotional support to families and to allow them to ask questions. There will also be activities for children, with drama and singing, and as the event is a week before Christmas she is appealing to local companies to donate gifts for the children so that every child can have a present.

“If anyone wants to donate I would be so grateful,” she said.

She stressed the importance of enabling families to get together and give each other support.

“I think it is important as a parent to know that you are not on your own and that other families are going through the same journey,” she said.

For children and teenagers too it is important to know that they are not alone.

“Tom is the only child at St Mary’s to have it,” she said. “They have never had a child with it before.”

And although she says the school, in Menston, has been ‘fantastic’ she wants to raise awareness of the disease as much as possible so that the wider population and other parents, understand that children can be affected.

“The quicker they get a diagnosis the better,” she said. “If a child doesn’t get help they can end up with joint replacements and stunted growth.

As a nurse she finds it particularly frustrating that she cannot make her son better.

“One of the things Tom said to me was I just want to be normal again. Why can’t I be like I was before.”

“I can’t mend Tom, I can’t make him better,” she said. “So the best I can do is to raise awareness and to raise money so that the charity can find a cure.”

“We just want people to understand it a bit more, and if we can just help one person it will have been worthwhile.

For Tom not being able to do the ordinary things that other boys his age do is one of the worst things about the disease.

“I can’t do sports, and when my friends are playing sports I have to sit on the side,” he said.

Now studying for his GCSEs he thinks he might become an accountant or a scientist.

“He told me if he becomes a scientist he wants to find a cure for arthritis,” Clare said.

Anyone who wants to make a donation or find out more about the event, which runs from 10am to 1pm can contact Clare on 0113 391 0279.