Carnoustie respite home donation helps spina bifida sufferers

THE family of a teenager with spina bifida have praised the benefits of a respite home - just handed a ­massive donation '“ which gives them much-needed time to relax.

Alison and Anna use the hoist at Rebecca Cottage, one of the many specialist items of equipment available at the respite home which has been given a cash boost. Picture: Supplied

Rebecca Cottage in Carnoustie has been given £10,000 from global financial firm Aberdeen Asset ­Management to pay for its upkeep – a gift which has been greatly ­welcomed by 14-year-old Anna ­Pentony’s family.

The donation allows Anna and those sharing her condition the chance to enjoy holidays with their families in comfort.

Anna’s mother Alison, from Davidson’s Mains, Edinburgh, said: “Anna has a lot of complex care needs. Alongside spina bifida and hydrocephalus, she also has a condition called congenital central hypoventilation syndrome.

“Essentially, this means that when she goes to sleep, her brain stops sending signals to her lungs and so she has to use a ventilator overnight.

“Due to her age and spinal surgery, Anna can’t be lifted – she must be hoisted – and this coupled with her ventilation requirements can make it a struggle to take her on holiday.

“It can be difficult to find adapted cottages with hoisting, as well as a profiling bed which we need to help her dress.” She added: “Having somewhere that is specially adapted like Rebecca Cottage is a real lifesaver and we’d be lost without it.

“When you’ve got wheelchairs and ventilators to take on holiday, there’s no way to also take hoists and specialist beds without hiring a van.”

Anna and her family have visited Rebecca Cottage every year for the past decade – missing just one due to a hospital visit.

Alison said: “I can’t emphasise enough how important it is for ­families to have access to properties like Rebecca Cottage. My son Calum, who is eight, has been ­coming with us since he was born and he loves it as well.

“When you have a child in a wheelchair, the other can miss out on things like going to the beach as we can’t get the chair onto the sand. But it’s a 10-second walk from Rebecca Cottage to the beach, and we can see it from the conservatory, so he can have a freedom he doesn’t have at home.”

Rebecca Cottage is a four-bedroom cottage overlooking the sea in Carnoustie, able to sleep seven people, with a conservatory, lounge, adapted kitchen and bathroom. A tracking hoist runs from the bathroom into the single bedroom.

Deborah Roe, director of fundraising for SBH Scotland, said: “Rebecca Cottage has, for over 40 years, been a lifeline for families who are

affected by lifelong complex ­disabilities.

“Families who welcome the opportunity to holiday together in accessible accommodation set in tranquil surroundings.

“As a charity which receives little statutory funding, this donation will ensure that vital holidays at Rebecca Cottage continue long into the future for all those who need them.”

Around one in 1,000 pregnancies in Scotland is affected by spina bifida, which is a fault in the spine that develops in early pregnancy. Most born with the disability are paralysed from the waist down, can be affected by bowel and bladder complications, and will be lifelong wheelchair users.

Hydrocephalus – a build-up of fluid which increases pressure on the brain – can be associated with spina bifida, and can lead to social, ­emotional cognitive and behavioural difficulties.

Claire Drummond, of Aberdeen Asset Management, said: “Respite homes like Rebecca Cottage are invaluable to families dealing with spina bifida and hydrocephalus. Giving them the freedom to enjoy a holiday together, without the burden of bringing large amounts of specialist equipment.”