'My child has a new lease of life'

By Jane Elliott
Health reporter, BBC News

Oliver has gained independence

Oliver Baines used to spend every day either lying on the floor or strapped into his chair.

He had no awareness of his own body, no muscle tone and was incredibly passive - spending much of his time asleep.

Today, after four years of targeted therapy and education, the nine-year-old can propel himself wherever he wants.

His muscles have strengthened and thanks to the use of a special "gait trainer", Oliver, who has West Syndrome, which causes epilepsy, can even join in playground games with his friends.

Achievement

His mum Julie said she was delighted by his progress.

"I never thought I would see such a great improvement.

We are amazed, he has just been going up level after level Julia Baines

"He has certainly done himself, and us, incredibly proud.

"When he was first born he had no head movement and then could not sit up, but now he is getting around by himself.

"He is like a whizz kid. And because he can do this, it is like a new lease of life for him. I am so proud of him. It is fantastic."

Oliver was three-years-old when he started at the special school St Luke's Primary, in Scunthorpe, North Lincolnshire.

Specialist help

Teachers enrolled him on the MOVE programme, which uses education and therapy to teach disabled children the core skills of sitting, standing and walking.

Specialist MOVE trainers then work with members of the child's team, including parents, teachers and health practitioners, to offer the child an individually tailored programme.

Oliver's teacher has noticed great progress

Research has shown that 72% of those on the scheme increased their mobility within their first year.

But the charity MOVE Europe says too few children are currently able to access the scheme - only 1.5% of the UK's 110,000 severely disabled children can.

Currently, only two English local authorities and nine in Scotland make MOVE available to children.

The charity is urging the government to recognise the health and social benefits.

Kate Gare, of MOVE, said: "We have asked the minister for social exclusion to ensure that, as her action plan on social exclusion develops, families who have a member with complex disabilities or health needs are included.

"We have written to the minister for disabled people, highlighting the improvements to quality of life that MOVE can bring to children and young people with complex disabilities or health needs."

Aims

Peter Holland, chief executive of MOVE Europe, said: "By getting children moving about, whether that's playing football with friends or just moving from a wheelchair to unsupported seating, Move can help to realign bodies, stretch out vital organs and improve muscle tone, all critical for future health.

"Ultimately, MOVE gives children the chance to realise their full potential and be, first and foremost, children."

Julia Baines said the benefits for Oliver had been tremendous.

"We are amazed, he has just been going up level after level," she said.

Alison Harland, assistant head at Oliver's school, said: "When he first came into the school, he was what we call a 'floppy child' and his mother had been told he would never sit up or walk.

"Now he can sit up on the floor unaided and walk in his pacer (a special walking frame). It gives him his own choices. It has taught him physical steps, but has also helped improve his cognitive skills by expanding his environment."

Christine Shaw, MOVE's senior paediatric physio, said that the key to the programme was to keep everyone involved.

"We get the whole team around the child - ourselves, staff and the parents who know the child best.

"We look at what they can do and what they want to do that they cannot at the moment - which could be something like sitting together with the others on an ordinary chair at the dining table - and then we work to those goals."

A spokesman for the Department for Education and Skills said a review of facilities for disabled children and young people was under way.

"The government recognises the important role that programmes such as MOVE can provide in enabling disabled children to meet their full potential," he said.