Holidays don’t come easy for fourteen-year-old Anna Pentony, who was diagnosed with spina bifida and hydrocephalus at birth and is paralysed from the waist down. But every year she and her family visit Rebecca Cottage in Carnoustie, a respite home run by charity Spina Bifida Hydrocephalus Scotland (SBH Scotland), to take time off and relax. Global financial firm Aberdeen Asset Management has donated £10,000 to the charity in order to pay for the upkeep of the cottage, allowing Anna and those sharing her condition the chance to enjoy holidays with their families in comfort.
Anna’s mother Alison, from Davidson’s Mains, says, “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.
“Having somewhere that is specially adapted like Rebecca Cottage is a real lifesaver and we’d be lost without it. We recently visited another holiday cottage up north, but we had to take other people to help us with Anna. Family members aren’t always available to come away on holiday, though, so my husband John and I have decided that we won’t be able to return. 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 – and they often book the following year’s holiday as soon as they return.
Alison continues, “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. And the conservatory is great for people with disabilities; it’s lovely to have that ability to sit and watch the boats and the sea, even if the weather is poor.”
Rebecca Cottage is a four-bedroom cottage overlooking the sea in Carnoustie, able to comfortably sleep 7 people, with a conservatory, lounge, adapted kitchen and bathroom, and specialist bedrooms on the ground floor. A tracking hoist runs from the bathroom into the single bedroom. A stair lift provides access to the first floor, which features more bedrooms and a wet room.
Deborah Roe, director of fundraising for SBH Scotland, says, “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. SBH Scotland is incredibly grateful to Aberdeen Asset Management for their generous donation of £10,000 towards our award-winning respite cottage in Carnoustie. 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 1 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. SBH Scotland provides a lifetime commitment of specialist support to all those affected by spina bifida and hydrocephalus, including parents, carers and siblings.
Claire Drummond, head of charitable giving at Aberdeen Asset Management, says, “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, allows them to enjoy their time without the fear of being underprepared. Aberdeen Asset Management is proud to support such a worthwhile cause.”
As well as financial support, staff at Aberdeen Asset Management’s Edinburgh office can help out with SBH Scotland’s family group in the capital, volunteer at the charity’s new bee and butterfly sensory garden in Cumbernauld, and aid with painting and decorating at Rebecca Cottage.
The Aberdeen Asset Management Charitable Foundation was established in 2012 to formalise and develop the Group’s charitable giving globally. The Foundation seeks partnerships with smaller charities around the world, where funds can be seen to have a meaningful and measurable impact and the firm encourages its employees to use their time and skills to support its charitable projects. The main focus of the Foundation is around emerging markets and local communities, reflecting the desire to give back to those areas which are a key strategic focus of the business and to build on the historic pattern of giving to communities in which Aberdeen employees live and work.
For more information on SBH Scotland, visit www.sbhscotland.org.uk
For more information about the Aberdeen Asset Management Charitable Foundation, visit www.aberdeen-asset.co.uk/aam.nsf/foundation/home