`Two years ago we were told our three-year-old daughter Chelsey was so badly brain damaged, from a virus, that nothing at all could be done for her - we just had to wait for her to die," says Theresa Austin, from Scotland. Now Chelsey is walking, talking and "a few months ago, we were told she will have a place at the local school when she's five". The transformation in Chelsey's life came from an intensive exercise programme designed by the Brainwave Centre for Rehabilitation and Development, in Somerset, England.
Chelsey's story, reported in a women's magazine, gave Joe and Marysia Elliott from Ashbourne, Co Meath hope that their son, Luke, might also benefit from a Brainwave programme. At seven months, Luke fell out of bed and sustained severe injuries to his brain which has resulted in developmental delay. "We weren't unhappy with what we were getting from the health board," says Joe. "We just wanted more."
When Joe and Marysia took Luke to Brainwave for an initial assessment, the two-year-old could not move from one position to another, communicate verbally or interact with his brother, Sam, who is one year older, or his baby sister, Georgia. Within two months of beginning the exercise programme, Luke could sit up on his own; after six months he was saying a few words; and after nine months, he started to crawl. Now, 15 months later, Luke is a happy child who is walking, starting to talk and continuing to acquire new skills. Although he is still developmentally behind an average four-year-old, Marysia says, in the past year he has made the progress an average child would make in one year.
Since 1982, Brainwave has treated more than 1,300 brain-injured children with conditions including cerebral palsy and Down's syndrome and claims 80 per cent of children on the programmes have made significant progress. "A severely brain-injured child is not going to make huge progress," says chief executive David Davies, "but there may be small changes which in many ways are just as exciting. We don't make promises and we aren't miracle workers but occasionally a parent will ring up and say: `The paediatrician said my child would never walk, but today he took his first step'."
The rehabilitation programme for each child is designed by experts (the centre's staff have backgrounds in nursing, teaching, psychology and social services) but it is carried out by parents and volunteers. Joe, a pilot, and Marysia, a software engineer, have 26 volunteers for Luke. "Some are older people, like our parents and their friends, who are used to children, and some are our own friends," Marysia says. "We have volunteers from the computer industry and from Aer Lingus cabin crews. Everyone has their own slot, and comes for one block, which is two 30-minute sessions with a break. We need two volunteers for each session and do four sessions a day and two at weekends."
Luke clearly enjoys the programme which takes place to a background of relaxing music and involves such fun activities as being twirled around in an office chair (for balance), walking through the steps of a ladder laid on the ground, and identifying shapes and colours. "The volunteers take great pride in his achievements," says Brida Cahill, one of Luke's grandmothers. "It's a great incentive to keep coming. We all enjoy it."
"The programme works on all different levels," says Davies. "It takes the pressure off the parents, who can become almost enslaved by the child, and the child benefits from interaction with different people. It empowers parents."
Parents and child return to the centre every four to six months for an assessment and a new exercise programme, and support and advice is available by phone at any time. There is in general a lack of information about complementary therapies, the mother of one three-year-old with cerebral palsy, from Co Cork, observes. "I asked medical professionals but they didn't know of anything." She took her daughter to Brainwave in 1997 - soon after reading about it in a magazine in a dentist's waiting room. "I was glad I went to Brainwave, although the progress hasn't been dramatic. If I didn't do the programme, I'd never know what she might have done. I can't take the chance in not doing the exercises. Every time I go back, they see progress."
The theory behind the Brainwave programme is that the human brain has "plasticity" or "a capacity for change" and therefore remaining healthy brain cells can assume the function of damaged or dead cells. The Brainwave team is also interested in the possibility of "sprouting" or growing new neural connections which carry information in the brain. Thus the frequent repetition of exercises is vital, to create new pathways in the brain. "When we are working with an arm or a leg," says Philip Edge, director of the centre, "we are not merely working with the limb in question, but also the brain."
"People stop me in the street to tell me how well Emer is doing," says Marian McNulty from Athy, Co Kildare, who took her seven-year-old daughter Emer (who has a developmental delay which resembles cerebral palsy) to Brainwave more than a year ago. "In December 1997, she wasn't able to crawl, now she's standing up and opening the fridge door. Mentally, she seems to have become more focused and her communication has improved. She's not talking yet, but she's learning new words all the time."
Marian does not need to use volunteers for the exercise programme - her four other children, who range in age from 10 to 16, help. "We like to fit it into our day and make it into a game, fun. The school is very supportive and do the exercises with her as well."
Like many parents of children with brain injuries, Marian has spent a lot of time and energy looking for holistic therapies. "A lot of therapies can be combined - working with the overall child, not just one part. Brainwave combines different therapies with constructive advice and a very personal service. They're very free at putting you in touch with other parents who are using other therapies."
Marian would like to see a fund to help families who need financial assistance to access complementary therapies. Twelve Irish children are being treated by Brainwave, which is a charity and depends on donations from parents and fundraising. The centre hopes to set up a temporary base in Ireland to make the ongoing assessments easier for parents and children, although the initial assessment will continue to be made in England.
Brainwave also treats adult stroke victims and provides them, and their carers, with respite care at its Somerset centre.
For further information, contact the Brainwave Centre for Rehabilitation and Development, tel: 0044 1278 429089; fax 0044 1278 429622. The charity's web site is at www.brainwave.org.uk