Ross MSP backs £60K 'pod' bid for terminally ill Black Isle child; North Kessock boy (6) suffering Batten disease needs specialist care
A ROSS-SHIRE MSP has urged big-hearted Highlanders to get behind a crowdfunding plea for a purpose-built pod so that a terminally-ill Black Isle child in her constituency can remain at his North Kessock home.
The family of Reece Mitchell, who is six-years-old and has a life expectancy of 12, are trying to raise £60,000 which will provide them with 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 – which is a rare, neurodegenerative condition that causes blindness, extensive short term memory loss, early dementia, loss of physical movements, speech, and distressing seizures.
As he cannot weight bear or walk and is losing his sight, Reece is completely reliant on his mum Donna to provide all of his care needs. Sadly, there is no treatment or cure for Batten disease, and life expectancy is between six and 12-years-old.
Unfortunately the family home does not have a large enough downstairs room for a hospital bed and all of the equipment Reece will need in the near future, and the local council have 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 of over 20 years.
At present mum Donna is having to carry Reece up the stairs to his bedroom and bathroom, underlining the need for adaptations to the current property.
Highland Council offered the family another council house elsewhere in the Highlands, but the family does not wish to be separated from a very strong family and friends support network in the North Kessock area.
As well as the family, those supporting the crowdfunding bid include the Batten Disease Family Association and the family’s GP.
Mum Donna Brown said: “I know it’s a big ask to raise the funds, but to give Reece the best quality of life, the dignity and respect that he so deserves is to private fund the pod and it will mean as a family Reece’s final years will be as happy and settled as they can.
“Once Reece no longer requires the pod it can be passed on to another family that may find themselves in a similar situation.
“The pod will be Reece’s legacy in helping others.”
Kate Forbes MSP, who has been assisting the family since the beginning of the year, added: “Reece Mitchell is quite possibly the bravest boy I have ever come across.
"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.”
Wendy Thompson, family support officer from the Batten Disease Family Association, said: “Reece has a particular type of Batten Disease (CLN2) that causes a quick regression of his body and mind.
“This does not give his mum or his sister much time to spend with him and by having larger space within their home, they will be able to continue to care for Reece with the care and dignity that he and his family deserve; whilst continuing to share precious memories within his home surrounded by all his family and friends.”
The crowdfunding link can be found at www.cashforkidsgive.co.uk/campaign/raise-the-roof-for-reece-/fundraisers/donna-mitchell/