When Jamie Buckley’s beloved horse Cameron died, she was so devastated that she was left paralysed.
Living with autism has always been a struggle for the 21-year-old, from Tayvallich in Argyll.
And losing Cameron two years ago seemed to be the final straw.
Overnight, Jamie lost the power of speech and the ability to move, effectively locked in with grief.
Since then, her desperate family have searched for ways to treat the rare condition.
They have now launched a fundraiser to pay for specialist therapy in the central belt.
But Jamie’s mum Jenny says it shouldn’t have to come to this – and is convinced she would have got NHS help in a different postcode.
FND and Jamie – what happened?
When Cameron died two years ago, the grief was overwhelming.
It triggered a rare neurological response and Jamie’s body began to shut down.
Jenny, Jamie’s dad Lee, younger sister Drew, younger brother Vinnie and wider family could only watch helplessly as her condition deteriorated to paralysis.
Jamie’s paralysis was diagnosed with Functional Neurological Disorder (FND), a complex condition that affects the function of the nervous system.
Messages between the brain and body get confused, resulting in full body paralysis, painful spasms and seizures.
When Jamie’s paralysis worsened to the point she could no longer eat, she was hospitalised locally.
But the family had a glimmer of hope. She was on the waiting list to go to the Queen Elizabeth University Hospital neuro unit in Glasgow for inpatient rehabilitation.
Then they were dealt another major blow when the service was cut in December before she could go.
Patients were told to get support in the community from their local neuro teams – but there are no FND services in Argyll and Bute.
Jenny said: “We have been left with no choice but to to try and raise funds ourselves to pay for something that other people are receiving on the NHS, because they happen to live in the right postcode.
“It saddens me that there will be so many people in the same position as Jamie, not able to access help that should be available to them. It makes no sense to me.”
Kind donations = treatment
Family and friends stepped in to support the funding of private specialist care.
To help Jamie’s body regain movement, she is seeing Dr Jon Stone, a professor of neurology in Edinburgh. He is consultant neurologist at the Royal Infirmary and one of the leading researchers and experts in FND worldwide.
A therapist in Glasgow is helping her process the grief of losing Cameron.
After only a few sessions, Jamie was able to reach her first goal – to pat a horse again.
And last week she reached her second goal – to brush a pony.
The treatments – plus travel, accommodation and specialist equipment – are expensive. So Jamie’s auntie Cath Shaw has set up a Crowdfunding page which has raised almost £10,000 in less than three weeks.
With just a few sessions, Jamie’s paralysis had improved. She has started to regain mobility in her right arm.
She still cannot speak and communicates through a computer. Jamie said: “Before seeing Dr Stone and the neurophysio I couldn’t imagine it possible that I could get better.
“I thought I would always be trapped inside my body unable to talk or move. I was left without any treatment for eight months and nobody knew what to do. It felt like no-one cared.
Jamie thought there was no hope
“I was scared to believe Dr Stone initially as I couldn’t believe it could be possible for me to improve.
“I got to a point that I was convinced that it was my fault I couldn’t get well. Katey my neurophysio in Edinburgh made me see differently and now I no longer feel that way.”
But it is feared that the long road to full recovery will cost a lot more than the £15,000 target set on the page.
Cath writes about her love for her kind-hearted niece on the page. She says: “Jamie is incredibly kind, she is passionate about protecting animals and our planet. Before this diagnosis, Jamie combined her love of baking and helping animals to create ‘Jamie’s Charity Cake Box’.
“Over the years, Jamie has raised thousands of pounds through Cake Box for different animal welfare charities and local fundraisers, including RLNI and the MS Centre.”
Jenny said:Â “It is absolutely overwhelming. We are so grateful.”
And she spoke of Jamie’s amazing drive. Proud mum Jenny said: “Jamie’s main goals for the future are to be able to swim again and ride horses once more.
Paralympian inspiration
“Jamie gets her inspiration and drive from following Tully Kearney, gold medallist Paralympian swimmer. Her dream would be to one day be in an Olympic pool herself.
“She is so focused on getting better and pushes herself through a lot of pain to get there.
“Jamie’s strong relationship with horses and nature is the main drive behind her recovery.”
One in six people in the UK live with a neurological condition. But there isn’t the workforce or services in place to support them.
Why is Jamie not getting help?
A Scottish Government spokesman said: “We understand how distressing and debilitating having FND can be, and we want to ensure that people can access the best possible treatment and support.
“Through our Neurological Care and Support Framework we have provided over £90,000 to projects which specifically aim to improve the information and support available to people with FND in Scotland.
“We have provided a further £67,000 to the Mid Argyll MS Centre to deliver mental, physical and social support to people affected by neurological conditions across Argyll and Bute.”
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