Marie burst into tears when she heard about
special event
A week of fun for
mums and sons
 I caught up with them at The Doll’s House, a top restaurant in St Andrews, where the mums were being treated to a slap-up lunch — just part of a special day of pampering. They all received makeovers at Elmwood College in Cupar before being taken to St Andrews for a spot of Christmas shopping.
From there it was on to The Doll’s House for lunch, courtesy of owner Alex Knight (Carol Smillie’s husband) before heading back to Rachel House where a professional photographer was coming to take pictures of the mums with their boys.
It would take a heart of stone to begrudge these mums their day of fun. They devote their whole lives to caring for their boys, who have life-limiting conditions.
Grateful
Mary’s son Gerard (13) was born with a condition so rare it doesn’t have a name. Only two people in the world are known to have had it. The other was his sister Roisin, who died aged six months.
Gerard has a rare chromosome deficiency. He can’t walk or talk and his parents have had to learn to tube-feed him. Mary says he adores going to Rachel House and, like all families who use the hospice, she’s eternally grateful for the help and support.
She said, “The mothers-and-sons week is a wonderful idea. It’s been a great opportunity for us mums to spend some special time with our boys. They’re getting special treats as well, including a birds of prey demonstration.
“I first heard about Rachel House on a TV programme. I asked Gerard’s consultant about it and we’ve been coming ever since. As soon as we come through the door, his face lights up and he heads straight for the library to find his favourite toys. He knows the staff and they know him.
“His favourite thing is the clown doctors. The place just stops to watch Gerard. Often he has tears running down his face and folk get called from the office to come and see his reaction.”
Marie attends Rachel House with her son Kyle (8), who suffers from cerebral palsy, has breathing difficulties and can’t feed himself. Year by year, his functions have gradually deteriorated and he now needs round-the-clock attention.
Despite all this, Marie says he loves Rachel House — and Kyle has particular reason to appreciate mother-and-son week. “He’s a mummy’s boy,” laughs Marie.
“He’s a typical male who loves female company. He’s happy as long as he has an attractive female looking after him!
Bond
“We spend 24 hours a day, seven days a week looking after our children so we really appreciate days like this. It was a lovely surprise when I found out about it. I actually burst into tears.
“All parents have a strong bond with their children, but that bond is stronger when you don’t know how long you have left with them. Every time we come to Rachel House there’s a special moment. I’ll never forget the time staff took Kyle skiing. He’s wheelchair-bound, but they took him to the highest slopes.”
Ali Ness, from Edinburgh, attends Rachel House with her sons Robert (18) and James (13). Both boys have Pelizeaus Merzbecher Disease — a rare, genetic, muscle-wasting condition which causes constant pain and lack of muscle co-ordination.
She said, “I have to watch my boys losing their faculties one by one — their ability to sit up, feed themselves, go to the toilet and talk. It’s a heartbreaking illness.”
Ali says Rachel House has given her boys a reason to carry on living. “When I heard the word ‘hospice’, I was adamant my children wouldn’t be going,” she said.
“My mum died in a hospice. But I changed my mind after looking around. It’s such a happy, uplifting place and they love going there. It takes a lot of pressure off the parents and keeps the children stimulated.”
Gloomy
Isabel Durham was invited to mother-and-son week with her boy William (18). William suffers from the incurable Edward’s Syndrome, a chromosome abnormality which means his head is small in proportion to his body.
Isabel said, “When you think of hospices, you imagine they’ll be dull and gloomy. But Rachel House isn’t. The staff don’t wear uniforms and they treat William as a person, not a condition.
“He loves the water and revels in the hospice’s hydrotherapy pool and spa bath. Today’s outing shows how much the staff look after the families as well as the children.
“It’s wonderful news that a second children’s hospice is to be built because Rachel House has been a lifeline.”
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The Rachel House mums toast their big day out. From left, Ali Ness, Isabel Durham, Marie Adams and Mary Garvey at The Doll’s House in St Andrews.
