A mother has spoken of the “life-changing” impact which Scotland’s only specialist neurological centre has had on her daughter.
Krystle O’Farrell, 30, who has Wolfram syndrome, has been restricted to living in a hospital for more than a year, but was offered the chance to move into Sue Ryder Dee View Court in Aberdeen last year.
And, as the charity moves forward with creating an extension to its existing facilities in Kincorth – it has raised £2.7million of a £3.9m appeal – Krystle’s mum, Vicki, told the Press and Journal about the transformation which had occurred in her daughter.
Wolfram syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: diabetes insipidus, diabetes mellitus, optic atrophy and deafness.
Mrs O’Farrell said: “For years, we coped with Krystle’s condition at home, and it was hard, particularly because our son has the same condition, but we just got on with it.
“Over time, her condition deteriorated to the point where we couldn’t cope any longer at home and we needed help. The only option for us at that point was for her to go into a special facility at the hospital.
“We thought she’d be there for a year or so whilst we found somewhere else, but it was difficult to find a place that could cope with her condition and provide the specialist care she needed.
“We looked everywhere and tried many different places to see if they could accommodate Krystle, but none of them could.
“We wanted to find somewhere so that she could have her life back, because being stuck in hospital meant she was missing out on so much.
“When we found Sue Ryder, it was exactly what we had been looking for. Krystle now lives in a supported living apartment, so she has her own space with all the home comforts she had been missing.
“As well as her medical needs being covered, the support workers who are with her 24/7 have also helped to give her some normality back into her life – they’ve got time to have a chat, watch TV and do activities with her.
“She has done things while she has been at Dee View Court that she hadn’t been able to do for a long time, like her art.
“It has been completely life-changing. I can be her mum again, not just her carer. The burden of worry has been lifted off my shoulders and it is now possible to spend time together as a family.
“We can come and visit her and do normal, everyday things together like have dinner. All the staff are very supportive and we have a great relationship with them, if there is anything we need we only have to ask.”
Once the centre’s expansion is complete, it will be able to cater for more than 40 residents, almost twice its current number.
And Mrs O’Farrell’s story demonstrates the positive effect it can have on those who gain a place.
She added: “It is hard when you have a child who has a condition like this, you want to help them and to give them the best quality of life possible,.
“Here at Sue Ryder, that’s exactly what Krystle has.”
