A north-east family have described their anguish at trying to find a permanent home to raise their children.
Four-year-old Kelsie Heath from Fraserburgh suffers from Rett syndrome, a rare genetic disorder that affects only one in every 12,000 girls.
The disease, for which there is no cure at the moment, can result in low muscle tone, a delay in developing speech, and mobility problems.
In Kelsie’s case, she is unable to speak, requires hoists to be lifted and relies on a wheelchair for movement.
Her parents, Jason Heath and Shaunie Stuart, are now appealing for help from Aberdeenshire Council to find a new home that is suited to her needs before their daughter is forced into residential care.
They currently rent a two-storey property in St Andrew’s Drive – despite having been on a council waiting list for almost three years.
They turned down a bungalow last year because it did not have enough space for the lifts and wheelchairs Kelsie would need as she grew older.
But since then, they have claimed it is as if they “vanished” off the authority’s list.
Mr Heath, 28, who has to carry his daughter up and down flights of stairs for beds and baths, fears that health inspectors may soon deem the family home unsuitable for Kelsie’s development.
He said: “Aberdeenshire Council has failed to recognise the space required for the bulky equipment needed for Kelsie to continue to live at home. She has to be carried up and down the stairs to her bedroom and for a bath.
“This causes major problems as her mum, Shaunie, is pregnant.”
Mr Heath, who is Kelsie’s carer, also suffers from back problems, meaning the task of lifting her without support will become more difficult in the future.
He added: “We do not feel we are being listened to. It’s as if we’ve vanished from the council waiting list.
“There is a limit to what carers can do to help, as there is no ramp at the house and they won’t lift Kelsie’s wheelchair.”
Miss Stuart, 26, is due to give birth in October.
The family’s problems emerged, ahead of Rare Disease Day, which raises awareness about uncommon conditions and their impact on patients’ lives.
A spokesman for Aberdeenshire Council said it was continuing to work to find a solution to the family’s needs.
He added: “We have tremendous sympathy for the family.
“Housing officers and occupational therapists are working together to find suitable accommodation. The family were offered a home which we agreed to make adaptations to, but they declined the offer.
“They are still on the waiting list. If a suitable home becomes available, we will contact them.
“We have around 13,000 housing stock in Aberdeenshire with a turnover of 1200 homes a year. This means it can be difficult to find homes when people have specific needs and require a specific location, however we are always willing to discuss options.”
