Airdrie & Coatbridge Advertiser
Community is rallying round to help Kyle
Amazing effort to raise cash for special vehicle
An Airdrie mum is raising thousands of pounds to buy and adapt a special vehicle which will allow her disabled son to travel, relax and enjoy festivals across Scotland after fighting back from major surgery.
Kyle Stanfield has the rare progressive genetic condition Pelizaeus Merzbacher Disease (PMD), an inherited disorder only affecting boys which disrupts the central nervous system, motor abilities and co-ordination.
It means he has quadriplegic cerebral palsy, severe osteoporosis and is in a wheelchair – and last May had to undergo a life-saving spinal fusion operation, stopping his vertebrae from cutting off the air supply to his left lung, after two years of breathing problems.
The 13- year- old then spent three months in hospital in Edinburgh, including several spells in the high dependency unit after contracting sepsis and pneumonia, but is now “very well” and even back at school at Stanmore House in Lanark.
Now his mum, Samantha Smith, has raised nearly £4300 towards the cost of buying and equipping a former patient transport ambulance through her own fundraising efforts and the support of the Monklands community and friends from further afield – with the latest event being a Valentine’s ball this Friday.
She told the Advertiser: “Kyle has been through so much in his short life, and likely faces more ill health in later years – I’m determined to help him live the best life he can and enjoy this current period of good health.
“He’s very sociable and outgoing, with a love of the outdoors and busy places, and has travelled all over Scotland and attended many festivals; it’s one of our favourite things to do together.
“The major operation in May essentially saved his life due to his spine cutting off the air to his lung – it was such a difficult time for him and the whole family, but his courage never wavered and he remained such a happy, brave boy and doctors were astounded by his positive attitude while being seriously ill.
“However, Kyle’s ability to do the things he loves has been majorly affected by the surgery as he can no longer travel in his chair for as long, and it isn’t safe for me to lift him like I used to.
“He now has so much metal instrumentation holding him together that if he isn’t moved properly his bones could break.”
Now Samantha and the family plan to buy and fit out a former ambulance, specially adapting it into a camper van which will allow mum and son to enjoy days out and travel all over Scotland, and are aiming to be on the road in time for the summer holidays.
She said: “I decided the best way forward was to buy him this van and a foldable mobile hoist.
“The hoist has already proved invaluable as we used it to take Kyle on a much-needed relaxing break to
Aviemore in December.
“The van will allow Kyle to travel safely lying down, so we can go anywhere. Closer to home it means that after two hours he can have a lie out and stretches on his legs, then go back to enjoying himself.
“It will be used daily as a place for Kyle to relax, stretch out and have personal care; he’ll always have his space on hand instead of having to rush home like we do now, often having to cut short his days out.
“Once our van is ready we plan to attend Kelburne garden party, TRNSMT festival and then Belladrum Tartan Heart festival later in the year, as well as visiting all the beautiful places Scotland has to offer.”
Kyle was the first Scots child in a decade to be born with the very rare PMD, which was confirmed by genetic testing when he was aged just two.
His legs are most affected, and he had to undergo two full hip reconstruction surgeries in the past three years – which were described as “very painful and traumatic for him” – before his major 2019 surgery.
Samantha said: “His condition affects the myelin in his brain, meaning the signals can’t get through properly; so to attempt to pick something up, Kyle has to tell his hand to move several times before the signal will get through.
“We were very lucky to get his diagnosis as PMD is often misdiagnosed as general cerebral palsy. Kyle is nonverbal but communicates via his own sign language, switches and his Boardmaker symbols book.
“Kyle never gets frustrated, he is genuinely the most happy kid you could ever meet and throughout it all, has remained incredibly brave; he’s bounced back with that huge smile each time and pulled me through too. I’ve done my best to ensure his life experiences are not limited by his physical disabilities; everything he’s been through makes me more determined than ever to have him out enjoying his life to the fullest.”
She began the fundraising with a sponsored walk at Coatbridge lochs last autumn, while friend Alex Leslie raised £1600 by cycling 500 miles during September, and the family’s Christmas fair contributed another £400.
They also received £850 from family friend Mark Young, who completed the Great Scottish Run to add to the total, and Cairnhill Colts generously donated £500 from a fundraiser.
Samantha said: “We’ve had amazing support from the Airdrie community and beyond, and we’re hoping to raise another £1000 at our Valentine’s ball and karaoke on Friday to allow us to purchase the van.”
The fundraiser on February 21 takes place at the Moy Hall in Airdrie and includes a DJ, karaoke, entertainment, buffet and raffles.
For information on tickets, which cost £5 each, or to help with the fundraising effort, contact Samantha via www. gofundme/ MilesforKyle. com or by emailing samanthasmith454@gmail. com.
Kyle has been through so much in his short life, and likely faces more ill health in later years