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years of love,
hope and tears
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 Is success defined by turning the dream of a new hospice in the West of Scotland into reality in March when Robin House opens?
Or is it because Rachel House in Kinross offers a lifeline to every child and every parent who crosses its threshold?
Well, success is measured in all of those — and so much more.
We rate our CHAS campaign a success because of the lives it has touched — patients, parents, volunteers, pop stars, politicians, our readers and ourselves.
Fantastic journey
For every one of us at The Sunday Post who has answered a phone call from a reader, or met so many of you at events throughout Scotland, it’s been a fantastic journey.
We’ve been more moved than we can say by your generosity. Not just by the money you’ve given, but by your generosity of spirit. The way you’ve baked a blinder. The way you’ve hauled trucks, ridden bicycles, danced, slimmed, exercised, made lines of pennies, done umpteen crazy things to persuade others to support CHAS.
And then there are the amazing parents and children who have opened their hearts to us at such difficult times . . .
The first ones I met were Robert Ness, who is now 18, his brother James, now 13, and mum Alison from Newbridge near Edinburgh.
Ali Ness is a fighter for her family. She gives round-the-clock care to her two sons who suffer from Pelizeaus Merzbecher Disease — a rare, genetic, muscle-wasting condition which means they have severe muscle co-ordination and constant pain.
I spoke to her last week, three years on, and she’s still fighting to give her boys the best quality of life she can. “It doesn’t get easier,” she admitted. “Robert has deteriorated. He has breathing difficulties, can’t feed himself and when I dress him
I’m frightened of breaking his bones.
“He wakes in the night shouting because he needs oxygen. The only proper rest I get is when he goes to Rachel House for respite care. It’s been a blessing to our family.
Energy
“When he comes home after a visit my energy is renewed and I’m able to give him the care and love he needs. He’s on morphine a lot of the time and when it kicks in and he’s pain-free we try to involve him in what’s going on at home. We play his favourite music or have a barbecue, that’s when he’s happiest.
“James is doing well at the moment, he enjoys school and watching TV.”
As well as looking after her two profoundly handicapped sons, Ali and her husband Graham have two other children, 19-year-old Graham and Martin (12).
Martin is struggling right now with fears about Robert. “When he hears Robert crying in the night, Martin worries he’s going to die. His anxieties have affected his school work. He’s just started secondary and I want him to have the chance to do well there. A counsellor from Rachel House comes out to spend an afternoon every week with Martin and this helps him talk about his problems. He has written a book about how he feels about Robert’s illness and that’s helping him.
“CHAS doesn’t just help the child. It’s involved in caring for the whole family.”
Naomi McKay was the only child in Scotland to suffer from Giant Axonal Neuropathy. There are only six children in Britain with this rare genetic disease. Her family were among the first to contribute to our campaign.
Sadly, Naomi died in March 2003, aged nine, but every moment of her short life was filled with love and care.
“The day before she died from a chest infection our daughter was at school,” says her mum Marilyn, who lives in Lossiemouth with husband Graham and their other daughter Chloe (12).
“In the evening she was ‘dancing’ in her wheelchair to Gareth Gates’s music. Her death was sudden, but she suffered no pain. I phoned Rachel House to tell them, because our whole family had been visiting there for four years.
“It was a holiday for all of us and Naomi loved it. She laughed with excitement on the three-hour journey because she was going to be with her friends.
“When your daughter is so ill it’s the most important thing in the world to a mother to see joy on her child’s face.”
Funeral
And the support from CHAS continued after Naomi’s death. Two of the Rachel House care staff, Jackie Keegan and Kate McLeod, went to Lossiemouth to be with the family in the days before the funeral.
“Jackie sat with Chloe at the funeral and helped her to cope. They were with us all of the way. We collected £1100 at Naomi’s funeral and we gave it to CHAS.
“There’s a Memory Book at Rachel House and we wrote our feelings about our beautiful daughter. As a family we stay for a few days every year at the hospice on the anniversary of Naomi’s death.
“It helps us heal and it helps us smile and keep on living.”
Robyn Watterson is the face of the CHAS campaign. She’s a beautiful blue-eyed, blonde, little girl who has won the hearts of all our readers.
Next month, Robyn will celebrate her 8th birthday. But she suffers from Hurler’s Disease — a genetic condition with a life expectancy of 10 years.
Time is running out for little Robyn, her dad Gilbert told us last week.
“She’s very poorly just now — she’s lost her speech, her hearing comes and goes and she can’t walk any more. But thankfully her sight is good and she still has her mischievous smile. She’s very aware of all that’s going on. Her favourite film is Snow White, but last week she was laughing at The Cat In The Hat.”
Robyn’s food needs to be blended, she’s on a ventilator at night, but her parents Gilbert and Sylvia start every day with one wish — to make it a happy day for their only child.
“I’d give my life”
“We’ve been treating her like she’s on borrowed time since she was months old. We don’t look too much to the future because that’s too sore.
“When her time comes we don’t want to hold on to her, we need the strength to let her go,” said 29-year-old Gilbert. “I’d gladly give my life to save my daughter. I want her to be with us for ever and we value and cherish every moment of her life.
Recently she had severe breathing difficulties during the night and I found myself saying, ‘You can go now darling if you want to’. But even as I was saying it I was hoping that our girl will be alive when Robin House opens next year.
“Rachel House is the only place we can take Robyn where we know people won’t stare, won’t comment. We feel safe. Robin House is desperately needed for so many children. I know it will be a place where love lives.”
Next
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You can e-mail us at:
hospice@sundaypost.com
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Robyn with mum and dad Gilbert and Sylvia.
