Smile of hope from Bel, facing the challenge of living with paralysis

Bel Young is looking forward to her birthday. But unlike other girls approaching 10, she doesn’t want an iPod or a new top.

She wants a special wheelchair which will give her back some independence. “It is my birthday at the end of July and I really hope the new chair arrives before then,” says Bel with a smile that lights up the room. “I will be able to operate it myself and it goes up and down, so will be able to stand up and see mum cooking.”

A year ago, Bel lost her grip on a neighbour’s climbing frame and she fell to the ground, breaking her neck. At one stage it was feared she may not pull through but she is a fighter and she survived. However the accident left her paralysed, unable to move her arms and legs or breathe for herself. On the night of the accident, her parents, Vanessa and Simon, were told that their daughter would never walk again and would spend her life in a wheelchair.

Her mum has never been able to return to the home in Ilkley close to where the accident happened in a neighbour’s garden. She moved in with relatives and did the daily commute to Leeds to be with Bel while their house, which was already on the market, sold.

“I just could not bear to go back there,” says Vanessa, who still cannot bring herself to relive the horrendous hours following Bel’s accident.

“It was hard on all of us. We have a little boy, Harry, who is six. Initially Bel was very poorly. She suffered a collapsed lung and then had to get used to having the tracheotomy fitted which was quite traumatic and there was no option but for her to be in hospital.

“She had to wear a halo to keep her head still for 12 weeks. But as she got fitter and fitter the only reason for her to stay in hospital was the physio. She was so fit and mentally aware it became harder and harder for her to be in hospital.”

The family moved to Harrogate and she was able to come home for a few days and nights a week.

“We got it down to three nights in hospital but even that was too much for her,” recalls Vanessa. “She wanted to be at home.”

The family decided they couldn’t keep Bel in hospital any longer.

Thanks to a massive fund-raising initiative by people touched by Bel’s story, the family were able to buy the equipment necessary to allow her to come home, which she did in March. “The change in her was almost immediate,” says Vanessa who looks after Bel full-time.

“It is much better being at home,” agrees Bel. “I’d had enough of hospitals.” Although she tells me she wants to be a nurse when she grows up, after a stint as a waitress that is.

A move home also meant Vanessa and Simon could get Bel the physiotherapy they feel she needs for her on-going care although they have to fund it themselves. They heard about Mark Wilkinson from Paragon Physiotherapy through Penny Roberts, herself paralysed after a parachuting accident. “Penny has been an amazing help and source of inspiration,” says Vanessa.

And it is clear seeing Mark working with Bel that the pair have a special bond.

“She works far harder for Mark than she did for any of the hospital physios. She trusts him implicitly and he has been brilliant with her from the start.”

“I always tell her the truth,” says Mark, who specialises in spinal injuries. “So she trusts me. She’s nine and she’s not stupid. She knows when adults are lying or keeping things from her. I have to work her hard or her muscles will stay in spasm.” Although Mark has only been working with Bel for two hours a day, four days a week since March, he and Vanessa can see an improvement in her movement.

“To most people it may seem very small but to us any improvement is marvellous,” says Vanessa. “She’s always been stronger down her right side and since Mark has been working with her she has quite good movement in her right fingers and he is working on her grip. We are hoping that she will be able to feed herself. She can now with some support from me. But it is incredibly tiring for her.”

To see Mark working with Bel it is understandable that she ends up exhausted by the end of the two-hour session.

“One of the cruel ironies of a spinal injury is that the muscles will go into spasm but the brain can no longer send messages to control them,” explains Mark. “I have to physically straighten her muscles and tire them out. By the end of the session her muscles are much more relaxed. A physio session for Bel is like us going for a ten-mile run.”

Normally Mark takes Bel off her ventilator when he is working with her to encourage her chest muscles to work. Although on the day I visit she has a cold and so remains attached to the ventilator. “A cold is bad news,” says Vanessa. “She cannot cough so the trachy (tracheotomy) can get blocked and we have to clear it with suction. It took two hours the other night.” But Bel, ever smiling, takes the day-to-day challenges of life in her stride.

“She is amazingly positive and makes it easy for us,” says Vanessa. It is Bel’s spirit and loving personality which has touched the hearts of so many people across Yorkshire.

“I met a boy the other day who I didn’t know,” says Bel. “He had stood up in front of his school and told them about me, and then held a cake stall and raised over £300. It is amazing.”

“The response from people has been overwhelming,” says Vanessa, who has set up the Being Bel Trust, to raise money for Bel’s ongoing care, the £30,000 wheelchair she is so looking forward to and adaptations to the family home.

In September, Bel goes back to school, something she is really looking forward to.

“I really miss school dinners,” she says. Bel can move her neck independently and uses a specially-adapted computer and stylus to allow her to access the internet and communicate with friends. “Going back to school will put some normality back in our lives,” says Vanessa. “Bel needs to spend more time with children her own age, not just her mum.” As for the future, the family try not to look too far ahead. Bel’s spinal cord is not severed and therefore her parents are hopeful she will one day be able to walk again.

“As long as she is improving there is every reason to be optimistic. After the accident a friend we go on holiday with said we’d get Bel back on the beach again. I didn’t believe her and then a few weeks ago we did, it shows you that anything is possible. There are so many advances that I feel we are on the cusp of something, although we will never allow Bel to be a guinea pig. It is a hard balance between being positive and giving false hope, but we have to have hope. Doctors said she would never come off her trachy and she does now for two hours at a time.

“We have to believe there may be a chance she will walk again. But we don’t know, nobody knows.”

PHYSIO GOES THE EXTRA MILES FOR BEL

Mark Wilkinson is rowing a million metres in 60 days to raise money for the Being Bel’s Trust. He started his challenge on Saturday and aims to row the equivalent of 50 half-marathons on a rowing machine. If Mark completes his feat it will be the equivalent of rowing from Yorkshire to the middle of Germany, and could land him a world record. Most of his rowing sessions will take place in the fitness centre at Craven Swimming Pool, Skipton, but he aims to complete his final day’s row at Kilnsey Show and wants to raise £50,000 for Bel. For more details email [email protected] or call 07866 499094.