TIM OWEN has a rare form of muscular dystrophy. The first signs of the genetic disease began to show themselves in early adulthood and within a few short years he went from being an enthusiastic sportsman, playing football and cricket, to walking with a stick.
Both Tim, now 47, and his family were understandably devastated when they discovered that his condition, Spinal Muscular Atrophy, is progressive and incurable.
What’s more, there is no medication or treatment currently available to help alleviate the symptoms.
For as long as he could, Tim, a former warehouseman, struggled to maintain his independence, living alone in Newsome and then in sheltered accommodation in Ravensthorpe, relying on the support of his mum Hilary Hanson and younger brothers Martin and Richard.
But 13 years ago he became wheelchair bound and was forced to move into the Leonard Cheshire Disability Beechwood home in Edgerton. "He needed more care than we could give him. It was good for us as a family," says Hilary.
Tim is one of 26 disabled men and women who live at the home, which is owned and run by a charity. Some residents are severely handicapped, many are wheelchair users and most require a significant amount of support in their daily living.
Sadly, for the members of Tim’s family, his growing disability is not the only tragedy they have had to bear. Less than a month ago his younger brother Martin, a father of two, died suddenly at home from acute cardiac failure at the age of just 45.
Martin and his daughters were regular visitors to the disability home and at the funeral it was decided to have a collection for Beechwood’s minibus appeal, which raised £300.
"I know that Martin would be so proud to know that in some way he had helped with this for Tim and all the other residents," said Hilary, 72, who is a full-time carer for husband Barrie and still finds time to visit her son every day.
The minibus appeal is dear to Tim’s heart as he enjoys getting out and about whenever he can. At the moment his travels are covered by a £190 a month allowance for mobility, part of his Disability Living Allowance, which covers bus and taxi fares and longer trips with his mum.
According to Pat Whalley, Volunteer Coordinator at the home, there’s now talk of the Government taking this allowance away from people like Tim who live in disability homes. If this does happen then it’s more important than ever that Beechwood raises enough money to refurbish and repair its secondhand minibus.
"I go to town on the Access bus twice a week because it has a wheelchair ramp," said Tim, who also attends Kirkheaton Parish Church when he can.
His mobility allowance funds the simple pleasures of visiting music shops to buy CDs and attending football matches.
"I like to go to football matches," says Tim, "but taxi fares can be very expensive and I don’t go as much as I used to. Without the allowance I wouldn’t be able to go anywhere."
A taxi-driving friend recently took him to support his favourite team Arsenal playing at Leeds United but there was a time when he travelled to London for matches.
In the past he also made regular trips abroad with Hilary. "We’ve been all over the place together, but I’m 72 myself and I just can’t manage it any more," she explained.
Although Tim’s condition has now deteriorated to the point where he needs help with feeding, he remains as cheerful and independent as possible.
"Tim has a good brain," said Hilary. "He organises a quiz night every week at the home. "He asks the questions off the top of his head and always knows the right answers."
Over the years Tim and his family have learned the hard way how difficult life can be with a disability. "It’s amazing how people don’t realise how difficult it is even to get on a train," said Tim. "There might be a ramp but then there’s no room to turn your chair around when you get on board."
They have also found that not all shops and restaurants have the sort of access that is needed, despite recent legislation that aimed to improve facilities for the disabled.
And now residents at Beechwood fear that Government cuts will make life even tougher.
"We have to fund-raise just to keep the building going," said Pat, "which is why it has been so hard to put money into the minibus appeal.
"We’d be really grateful for anyone who wants to support us with fund-raising or become a volunteer to help with our programme of activities," she added.
"Unfortunately, we can never get enough help to do everything we would like and transport can be a real problem.
"Our volunteers get so much satisfaction from helping out."
Pat wants to hear from anyone willing to take part in sponsored events – a team from the home (including Tim) will be joining this year’s Examiner Challenge. Beechwood is one of the event’s designated charities.
The home is also in need of new IT equipment and welcomes donations of secondhand working computers.
Volunteers are needed to run activities in the home and act as escorts to residents who want to go out in their wheelchairs.
Anyone interested should contact Beechwood on 01484 429626 or email firstname.lastname@example.org
TIM suffers from a rare type of muscular dystrophy called spinal muscular atrophy.
The condition is inherited and has a number of forms. The adult-onset forms typically start after the age of 20.
MD causes muscle weakness and a progressive loss of movement by damaging the nerves of the spinal chord.
Around 6,000 people in the UK have some form of spinal muscular atrophy.
Children whose parents are both carriers have a one in four chance of developing the disease.
Kennedy’s syndrome is the adult form that manifests between the ages of 20 and 40.
It only affects men and is caused by a defect on the X chromosome.
Most forms of SMA appear in early infancy or during childhood.
The Leonard Cheshire Beechwood home in Huddersfield, right, is part of an international organisation founded by the late Group Captain Lord Cheshire of Woodhall, a famous war hero.
After caring for injured servicemen and women at the end of the Second World War, Leonard Cheshire discovered that those who were terminally ill had nowhere to go.
He ended up caring for them in his own house which became the first disability home.
Today the organisation runs 150 services for disabled people in the UK and another 100 in 55 countries worldwide