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Fighting Back

Rosie's on a mission to provide hi-tech wheelchairs to ease suffering of kids with muscular dystrophy.

NOT long after her seven-year-old son Ben was diagnosed with muscular dystrophy, Rosie Brawley went to Ashcraig School for physically and visually impaired children to meet other children who have the condition.

What Rosie saw that day inspired and frustrated her.

The severe muscle wasting condition, which has no cure, has a devastating effect on young sufferers and their families. As the muscles all over their bodies gradually weaken, many of the children face life in a wheelchair.

The children Rosie met at Ashcraig in Craigend, Glasgow, were determined to live life as normally as possible, but all too often their uncomfortable, unsuitable wheelchairs let them down.

The 35-year-old mother-ofthree, from Giffnock, knew she had to do something to help.

She set up the Yorkhill Muscle Fund to raise funds for hi-tech electric wheelchairs that can transform the lives of those with muscular dystrophy.

Now, 18 months after the charity was launched, thanks to Rosie's determination and the fundraising efforts of friends, relatives and local businesses, seven special chairs - each costing GBP4000 - have been given to children with the condition.

A recent charity event at the Hilton Hotel, organised by Rosie and other members of the Yorkhill Buttercup Ball Committee, which raises cash for projects linked to the hospital, earned GBP150,000 for the fund. This translates into almost 40 wheelchairs.

The amazing difference made by the chairs to the lives of those with muscular dystrophy was highlighted on the night by teenager Eoghan Warner.

Eoghan was given a wheelchair by Yorkhill Muscle Fund, and donated £2,000 of his own money, which was matched by a generous audience member, thus allowing another young person to get a chair like his.

Though Rosie's son Ben can walk, attends a mainstream school and does not require an electric wheelchair, it did not stop her helping others.

"When one of your children is diagnosed with muscular dystrophy it is devastating, " she said.

"You immediately think the worst and become very concerned for the future.

"At first, you are so afraid.Then you learn to accept the condition and live for each day without looking too far ahead.

"It was an especially difficult time for my husband Brendan and I because our first son, Declan, died at birth, and we were scared we might lose another.

"But Ben is a lovely wee boy with a great personality, who copes fairly well most of the time. He has stayed much the same since diagnosis, but we do not know what the future holds.

"What I saw at Ashcraig School had a huge effect on me.

"I immediately noticed the wheelchairs the kids were in just were not suitable to their needs.

"Some of the chairs were patched up with sticky tape and allowed only very limited movement. Then I spoke to parents, who explained the limitations of the chairs, and how this impacted on their daily lives."

ROSIE, who is also mum to five-year-old Michael and three-year- old Robbie, added: "The NHS can't afford to give every child a hi- tech electric wheelchair.

"I realised it could so very easily have been my son sitting in an inadequate chair.

"Brendan and I are lucky in that we could afford to buy our son the right wheelchair, but so many other families can't.

"We all knew there were fantastic chairs out there that could make such a difference, but it was all down to cost - it was torture for the parents."

Rosie teamed up with Marina Morrow, a clinical specialist and therapist who works between Ashcraig and Yorkhill Hospital to help young sufferers and their families improve their quality of life.

Between them, they came up with a high-specification wheelchair, specially-designed for each individual child, that would allow youngsters with muscular dystrophy to move more freely and have more control over their movements.

According to Marina, the chairs are a lifeline.

"As the condition progresses, the children become virtual quadraplegics, with very little movement in their arms and legs, " she said.

"Everything they do is wheelchair-based, from seven in the morning till late at night.

"These chairs have a riser function for going up and down, which means the youngsters can control their height and see the world from different viewpoints.

"The tilt and space buttons enable them to change the position of the chair into a more reclined position to rest their head and neck, and help relieve the build-up of pain.

"One boy we gave a chair to used to have to leave class to lie on a bed at different points during the day because he was in so much pain. Now his pain is relieved and he can stay in class all day, which is fantastic."

But the difference the chairs make is more than physical.

"The chairs are very important for self-esteem too, " added Marina.

"The young people get the freedom to go out with friends to the cinema or a concert, which is hugely important, and they can speak to others at eye level instead of always being looked down on.

"As the condition progresses, they are more dependent on others, and have to ask people to do things for them all the time, which can be very frustrating.

"These chairs give them back some sense of control. Muscular dystrophy can make them feel like prisoners in their bodies - but the special wheelchairs help them push the boundaries of their prison a little further away."

Marina is full of praise for Rosie's constant efforts to raise money and improve the lives of the youngsters.

"What Rosie has done is magnificent. She has been able to see beyond the plight of her child to help others.

"The difference she has made to the children is astounding.Without these chairs, they would not have any independence. Rosie has given hope to people who often do not have much hope left."

BUT the work does not stop here for Rosie. She wants every child with muscular dystrophy in west Scotland to have the wheelchair that suits their needs, and is determined to keep up with any technological advances that can help.

"We will be able to provide 40 more chairs with the money we have raised, but there are more than 100 kids on the waiting list.

"That is what keeps me motivated - we need to get chairs for them all. As technology moves on, we will keep upping our specification for the chairs and asking for more.

"Muscular dystrophy is such a cruel condition and these chairs do not solve all the problems.

"What we can do is to make life that bit easier for the children and their families and help them reach their own potential.

"That is what I wish for Ben and the others with the condition - to reach their full potential."

Factfile

  • Muscular dystrophy is characterised by the loss of muscle strength as progressive muscle wasting occurs. There are around 60 different types of dystrophy and related conditions, affecting 30,000 people in the UK.
  • The condition is genetic and mainly inherited and can cause shortened life expectancy. There is no cure.
  • Some forms of the disease are passed to children when one parent is a carrier of the gene.
  • Although there is no cure for muscular dystrophy, there are some treatments available, and much can be done to improve the quality of life of those affected, such as hi-tech electric wheelchairs.
  • The Yorkhill Muscle Fund has so far raised more than £200,000. To make a donation, call fund manager Sandra McCusker on 0141 201 0795 or send an e-mail to: sandra.mccusker@northglasgow.scot.nhs.uk

 

Reproduced with the permission of the Evening Times (c) Newsquest Media groups