The mother of a young boy with childhood dementia is fundraising for special pod accommodation so he can continue to live at his family home.
Donna Mitchell, who lives just outside Inverness, says she’s in a race against time to make her six-year-old son Reece’s life as comfortable as possible and wants to build a special accessible space for him in her back garden.
The six-year-old was diagnosed just over a year ago with Batten’s Disease, a rare group of disorders of the nervous system.
In the summer he lost his ability to walk, meaning Donna has to carry him up and down the stairs to his bedroom every day. He has also lost his sight.
“Reece was diagnosed with Autism and Epilepsy in 2017 but as time went on it became more and more apparent that things weren’t right,” Donna says.
“They say Batten’s Disease is a rare form of childhood dementia.
“You can see your child regressing; Reece knows my voice but doesn’t react to either of his sisters. He can still say ‘mum’ and we hear that a lot – recently he heard a baby crying and it kick-started a memory and he asks for the baby.”
“It is very difficult but because time is so precious I don’t want to waste a second feeling sorry for ourselves. I will save my tears for another time.
“I don’t get a second chance with Reece, it is all about giving him the best life we can”.
Reece’s condition has deteriorated rapidly and his family have been told his strain of Batten’s Disease is life-limiting. The nearest children’s hospice is 130 miles away in Kinross.
Now Donna has set her sights on building a pod in the garden of the family home with an accessible bedroom and bathroom to make his remaining time with them more comfortable.
Highland Council has offered Donna a new home 11 miles away but she says she would need to give up her tenancy once Reece is no longer with her and she could not imagine doing that.
A crowdfunding page called ‘Raise The Roof for Reece‘ has been set up for the pod and is almost halfway to its £60,000 target.
A design has been created by Highland company Carbon Dynamic and Donna says the pod could be used for other families in the future.
Donna says: “I will sell my soul if I have to.
“If I fail Reece now I have to live with that forever more. A pod would mean he can stay here at home; not in a hospice, and not in hospital.
“I think a lot of people think, well just move, but the council would want the house back again after Reece dies and I could not leave it again without my son.
“I will do whatever it takes to make sure Reece gets the life he deserves.”