'My son was four when he developed MS'

By Jane Elliott
Health reporter, BBC News

Liam (in green) is currently well

It is a common misconception that multiple sclerosis is a condition that affects only adults, but Liam Kelly is 14 and has already had it for a decade.

When Liam was four he started to complain that his body was sore to the touch. Then suddenly he was unable to walk.

His father, John, who is from Liverpool, said nobody knew what was wrong.

"We went to the hospital and he was just screaming if anyone touched him," he said.

"The doctors said they did not know what it was."

People say 'children don't get MS', but I am sorry they do John Kelly

Eventually MS was mooted after another relapse and a year later his diagnosis was confirmed.

Liam's father said the not knowing had been dreadful.

"I was horrified when I first got the diagnosis," said John. "I thought he is going to die, I thought it was final.

"People say 'children don't get MS', but I am sorry they do."

The MS Society says there is a misconception that MS does not occur in children.

Their research suggests there could be thousands of children with MS in the UK.

To highlight the issue, the MS Society held a conference this month with 60 experts and people from families with children affected by MS.

They heard about one child with the condition who has incontinence, but had been refused access to the toilet by an ignorant teacher.

Early treatment

Liam was one of the first of his age group to be put forward for a new drug Tysabri - recently approved by the National Institute for Health and Clinical Excellence (NICE) - which is thought to help slow the progression of MS.

He is currently in good shape - but his long-term prognosis is unclear.

"No-one know what the future holds for Liam," said John.

Typically, MS is diagnosed in adults aged between 20 and 40 and women are three times more likely to be diagnosed than men.

Recent studies suggest as many as 9,000 people with the condition could have started showing symptoms under the age of 16.

It is important to make an early diagnosis and initiate treatment so that these children can benefit from early treatment and an improved quality of life Evangeline Wassmer

Evangeline Wassmer, a consultant paediatric neurologist at Birmingham Children's Hospital, stressed the importance of starting treatment as early as possible.

"It is important to make an early diagnosis and initiate treatment so that these children can benefit from early treatment and an improved quality of life."

The MS Society has recorded cases of children as young as 13 months showing symptoms.

It warns that until it is widely recognised that children can get the condition, there will be confusion, with misdiagnosis and delays in treatment.

Jayne Spink, director of policy and research at the MS Society, said: "There are potentially thousands of children living with MS whose symptoms are not being recognised.

"Without better awareness of childhood MS these children could face years of care that fails to meet their needs, while their families are left in limbo.

"In MS, early treatment improves your long-term prospects. It is vital that children with MS are not left out in the cold."