A MOTHER has launched a crowdfunding appeal to build a tailor-made “pod” in her garden for her terminally-ill son so her family can stay in the home where they have lived for more than 20 years.
The family of six-year-old Reece Mitchell are trying to raise £60,000 which will provide specialist accommodation to care for him in what would effectively be a “mini-intensive care unit” temporarily housed in their back garden.
Reece has CLN2-type Batten disease, a rare form of childhood dementia which causes blindness, extensive short-term memory loss, early dementia, loss of physical movements, speech and distressing seizures.
Within the past year he has gone from being a fun-loving little boy who was “full of mischief” to losing the ability to walk and talk, his mother Donna Brown said.
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He is now completely reliant on his family to provide all of his care needs. There is no treatment or cure for Batten disease, and life expectancy is between six and 12 years old.
The family’s home in North Kessock, near Inverness, does not have a large enough room downstairs for a hospital bed and all of the equipment Reece will need in the near future, and Highland Council has ruled out an extension to the property.
This means a pod in the back garden is the only viable option for the family to remain at their home. Reece now needs palliative care and there is an outreach hospice team in place to provide support.
Ms Brown 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.”
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The online crowdfunding campaign has already raised over half of the money and with various groups in the Highlands due to hold fundraisers in the near future, it is hoped the full figure will come in before Christmas.
The pod would include a bedroom, washroom and living area for Reece, and allow his mother to stay by his side during all hours of the day.
Inverness MSP Kate Forbes has been helping the family.
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.
Ms Brown 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 and we are hoping to get it built as soon as possible.
“It means I can stay with him and be there for him if he needs me at any time. I have never wanted him to go into care.”
Once Reece no longer requires the pod it will be passed on to another family that may find themselves in a similar situation.
As well as the family, those supporting the crowdfunding bid include the Batten Disease Family Association, the family’s GP and constituency MSP Kate Forbes.
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.
Ms Brown added: “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.”
Ms Forbes, who has been assisting the family since the beginning of the year, added: “Reece Mitchell is quite possibly the bravest boy I have ever met.
“Tragically though, his condition is only going to deteriorate, and to that end he’s going to spend a lot of the remainder of his life being cared for in a hospital bed.
“It might sound like an unusual approach but the pod would enable the family to stay in their home area, surrounded by friends, as well as enabling Reece to be cared for in as comfortable an environment as possible.
“If anyone feels able to contribute to the family’s crowdfunding page then I am sure that the family will be enormously grateful.
“The fact that over half of the money has come in in a month shows you how generous people are.”
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