Work on a purpose-built pod for a terminally-ill Highland boy – who is completely blind and can only say ‘mummy’ – is to begin immediately after a successful £60,000 crowdfunding campaign.
The family of Reece Mitchell, who is six-years-old and has a life expectancy of 12, fundraised to provide specialist accommodation to care for him in what will 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 well as being unable to see, he cannot bear weight or walk, so 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.
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 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 in North Kessock 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 did not wish to be separated from a very strong family and friends support network in the North Kessock area near Inverness.
Thanks to the incredible generosity of the public, the full £60,000 has come in and preparatory works for the pod have started.
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 family’s campaign included the Batten Disease Family Association (BDFA), the family’s GP and constituency MSP Kate Forbes.
Mum Donna Brown said: “As a family this has been a long process and nearly a year. We cannot thank everyone enough for all the support and help.
“So many worked tirelessly behind the scenes, Connecting Carers, BDFA and Kate Forbes MSP’s office to help make this happen and I couldn’t have done it without them.
“We only went live with the fundraising in October and to have reached our target is just incredible and testament to people’s kindness and willingness to help.
“Not only have we had massive support from the people of the Highlands but from all over the country which is just astounding.”
Ms Brown added: “Now we can concentrate on giving Reece the quality of life he deserves, no more carrying him up and down the stairs and in and out the bath as I always feel that I’m man handling him.
“It’s getting so very difficult but with the pod in situ Reece will have the space to be cared for with the dignity and respect that he deserves.
“We now enjoy and try and make the best of the time we have. And as Reece’s disease progresses we don’t have the worry as to what’s going to happen as I will be able to care for Reece at home where he belongs.
“This pod will be life changing for us and from us all a heartfelt thank you for making this possible.”
Kate Forbes MSP said: “This is incredibly good news for a well-deserving little boy. People have been tremendously generous, and been moved by Reece’s story.
“His mum Donna is an amazing force of kindness and energy. She has mobilised hundreds of people to hold coffee mornings, do a sponsored swim and donate generously.
“This result is testament to her care for her son and the public’s generosity of spirit. I couldn’t be happier for them all.”
The pod will be installed and in use by the end of the month.