Transforming the life of Riley | Action Medical Research

Touching Lives - March 2009

Transforming the life of Riley

Riley's story

Being able to sit comfortably is something most children and their parents take for granted. But for some children with severe disabities, like five-year-old Riley Runciman, sitting in a standard seat or wheelchair can actually be a frightening and painful experience.

Riley, from Leigh-on-Sea in Essex, had a very traumatic birth. Serious complications meant that both he and his mum Mandy were lucky to survive. He was starved of oxygen for 12 minutes, which sadly caused significant brain damage, and he now suffers from a severe form of cerebral palsy called dyskinetic quadriplegic cerebral palsy.

As a result, Riley struggles to control his arm and leg movements and has whole body extensor spasms. Mandy explains: “His limbs will shoot out, his whole body will extend and he’ll become very rigid – a bit like an ironing board.”

Children like Riley are only really comfortable when they are sitting on someone’s lap. If they are sitting in a normal rigid chair the spasms will cause the body to push against that hard surface. “When he’s on my lap I can move with him and the spasm and gently bring him back to a sitting position,” says Mandy.

This means that Mandy and her husband Lee are almost constantly taking it in turns to hold their little boy and ensure he is comfortable and properly supported. “When we go out to dinner, Riley sits on Mandy’s or my lap and we take it in turns to eat,” says Lee. “Only very rarely will he be able to sit in a seat calmly.”

Most seats cause Riley to become very agitated and stressed explains Lee. “It can hurt him physically, leaving him with bruises or sores, or even make him sick and cause breathing problems. Sometimes he will scream and cry as though we are trying to sit him on a bed of nails, which is incredibly upsetting for us. Nobody likes to see their child hurting.”

But the right chair has so far proved elusive. Mandy says: “We’ve tried so many, but none have been right – it gets very frustrating. Each time you think the next chair is going to be the one, that life will be so much easier, but then it doesn’t work out like that. We’ve always said that Riley needs a chair which moves with him.” Promising prototype

With support from Action Medical Research and the Henry Smith Charity, that’s exactly what Professor Roger Orpwood, at the Bath Institute of Medical Engineering, and Alison Wisbeach, Head of Occupational Therapy at Great Ormond Street Hospital, aim to create. Their team is working on a chair with three hinged surfaces, sprung relative to one another, that move with the child as he or she goes into a spasm. Once the child has relaxed again, the chair gently returns them to their original position, emulating the behaviour of a parent or carer.

Professor Orpwood says: “The parents of other children must find it difficult to imagine the pain and suffering that just sitting in a normal chair can cause children who suffer full body spasms. The spasms are very difficult to control and once they start they have to be allowed to run their course. Normal rigid seating just makes them worse by causing a reflex increase in the spasm.”

Early findings from prototype designs have proved very promising and are now being further refined. “During our pilot work, we saw one child who had never sat for more than a few moments on her own,” recalls Professor Orpwood. “We put her in our test-compliant seat and she sat there for about an hour, quite comfortable, despite the spasms.”

Lee and Mandy are totally devoted to their little boy, whose wonderful smile can light up the room, and have high hopes for the future. Riley recently started school but the lack of suitable seating has meant the time he can spend in the classroom is limited. “He should be going full-time,” says Lee. “But can’t until he has a seating solution that will allow him to play a greater part in lessons independently. We believe his development will accelerate once he is able to do this.

“A chair like this could radically change Riley’s life for the better and help improve our family life too,” continues Lee. “It could improve his health and he’ll be happier and more content. It would also allow Mandy to have some free time, something she has precious little of at the moment. To be able to leave him unattended for short periods while we carry out normal mundane tasks, such as putting out the rubbish or cooking dinner, would make an enormous difference to all of us.”

Riley features in Action Medical Research's latest DVD. [Click here](http://www.action.org.uk/video/rileys_story) to view this short film.

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