A mum is in a desperate bid to raise £60,000 to build a tailormade ‘pod’ in her garden for her six-year-old son who has dementia.
Reece Mitchell was diagnosed with Batten’s disease – a rare form of childhood dementia when he was just five-years-old.
The youngster, who has recently gone blind, only has one word left in his vocabulary – ‘mummy’ – after losing his ability to communicate, drink and walk.
But the house where he lives with mum Donna in North Kessock, Scottish Highlands, does not have a room big enough to fit his hospital bed and medical equipment.
Mum Donna now wants to build a ‘mini-intensive care unit’ for Reece in her back garden which will allow them to stay in the home Donna has lived in for the last 20 years.
Donna, who cares for Reece full time, has to carry her son up the stairs to bed and to have a bath but hopes the pod would improve his quality of life.
Donna, 46, said: “It’s about his quality of life.
“I have to carry him up and down the stairs to get into his bed or give him a bath, and it is not very dignified.
“We don’t have room for all the medical equipment he needs and the thing with Batten disease is you don’t know what will change and when it will happen.
“He has recently gone completely blind having had limited vision for a while, and needs full-time care.”
More than £32,000 has already been raised from generous donors and Donna hopes to meet the full target in the new year.
The pod would include a bedroom, washroom and living area for Reece, and allow his mum to stay by his side at all times.
The alternative is for the family to move to another house provided by the local authority 12 miles away, where they would stay until Reece reached the end of his life.
And single-mum Donna, who also has daughters Courtney, 26, and Alexandra, 16, said the pod could be passed onto another family in need in the future.
She said: “We would have to move away from somewhere we’ve lived for 24 years, where our friends and family are all around us, and then move again once Reece dies.
“It would never be a home, but having the pod here would be an alternative to all that.
“Reece will need a profiled hospital bed.
“It (the pod) will have track hoists as well so we won’t need to be lifting him.
“It’s going to have a bath and there will also be space to store equipment.
“It’s basically an extension to the house but it’s not permanent and the beauty of it is that it can be reused.”
The appeal is being administered by the charity Cash for Kids, meaning the money will go directly to the local company who are building the pod.
Batten’s disease affects an estimated 100 – 150 children in the UK and has no cure.
It has a devastating life expectancy of just 12-years-old – with only 50 having the same strain as Reece, known as CLN2.
It leaves children suffering cognitive impairment, seizures, and progressive loss of sight and motor skills.
Early symptoms of the terminal illness appear between the ages of five and 10 years and parents have to endure the agony of helplessly watching their child’s rapid decline.
Donna said: “It’s not the easiest but we decided we’d make the most of the time we have and been giving Reece as much experiences as we can.
“Everybody’s really pulled together and the fundraiser’s been amazing.
“It raises awareness as well because Batten disease isn’t very common.
“We would like to thank everyone for all the donations, kind words and support.
“We still have a way to go with the fundraising but with everyone’s continued support we will reach our target.
“Our hope is that Reece’s pod will go on to help out many other families in the years to come and that will be Reece’s legacy.”
The fundraising page can be visited here https://www.cashforkidsgive.co.uk/campaign/raise-the-roof-for-reece-/
