An Aberdeenshire woman has revealed her hopes to create an £8million respite centre for children with severe disabilities or chronic conditions and their families.
Joanne Jamieson and her husband Euan spend every day looking after their son Rory, who has cerebral palsy.
The four-year-old requires constant care and 12 daily medications, the first at 5.30am and the last at 2am the next morning.
Mrs Jamieson has set up the Friends of Charlie House, which provides help and support to those in similar situations to herself.
But her bigger ambition – one shared by Tracy Johnstone, who established the charity Charlie House in 2012 – is to raise the £8million funding required to build the first respite centre in the north-east, which she believes is “essential”, given that the nearest alternatives are 200 miles away in Kinross and Balloch.
She said: “The charity was set up by Tracy, who provides help and support for the families. It is her vision which has got us to this point, where we have raised £1million.
“Our goal is to set up a respite centre for families who are dependent on a medically structured life, which limits what they can do.
“So many families have to deal with daily struggles, but some don’t get the chance to balance that out with happy times when they can relax and enjoy some quality time.
“Our families require 24-hour care in most cases and that can put huge pressure on them.
“It’s not easy to live any kind of ‘normal’ life. I can’t plan anything in advance and we have to deal with the uncertainty of Rory’s survival.
“Every cold or sniffle could lead to pneumonia, every infection could turn bad and the fact Rory isn’t robust enough to keep fighting this life for ever means that we live every day on the edge.”
The Jamiesons and their colleagues have a long-term objective to create a specialist respite centre, with provision for eight families at a time, with child bedrooms, separate parent bedrooms, a family dining area, sensory rooms, play rooms, a hydrotherapy pool and gardens.
Mrs Jamieson said: “We would like to thank the Inverurie community, who have given us huge support, and the businesses who have backed us, and, in particular, Barry Sangster of Inspire Flooring, who not only played a golf marathon every day in August, but also hosted a tournament for us which raised £5,000.
“We know Rory can never have a ‘normal’ Christmas, because he doesn’t really have any understanding of what is happening.
“But Euan and I work very hard to make like as normal as possible for Mollie, so we will work as a tag team to ensure she has a lovely Christmas.”
Charlie House already provides monthly meetings and support, along with a range of activities, for families such as the Jamiesons. But they are determined to make the respite facility a reality in the future.