Young Edinburgh woman diagnosed with heart-breaking Incurable condition

A group of kind-hearted friends are raising funds to support their pal after she was diagnosed with motor neurone disease (MND).

Nicola Macfarlane was just 46 when she was told she had the life-limiting condition in May last year.

The pals of the horse loving woman, from Edinburgh, suspected something might be wrong when she began to struggle carrying out routine chores at the stables.

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Now her friends Claire Kay and Emma Porteous have joined forces to organise a fundraising event at Dalkeith Miner's Club - as well as setting up a GoFundMe page.

Speaking to Edinburgh Live, pal Claire said: "Nicola, our friend, was diagnosed with MND. I do a bit of fundraising for her already but I want to do something big for her. Most people with MND only live for about two years after diagnosis."

Claire is also joined in her fundraising efforts with another friend Emma. Emma’s dad passed away very suddenly from a brain tumour so the pair will be raising money for two charities, My Name'5 Doddie Foundation and The Brain Tumour Charity. Together they hope to raise as much money at their big fundraising event on August 17.

Claire continued: “I have two businesses and children, there's no way I could have done something on this scale by myself. Emma will help me and together we hope to fill the hall, which holds 350 people."

"Nicola really wants to greet everyone coming into the event, and hand out prosecco. We are really looking forward to it.”

Speaking of how they all met, she said: “We all met through horses. I met Nicola about six years ago, we both had horses in the stables at Thornton farm in Roswell. Then four years ago we met Emma and we all just clicked.

"Just over a year ago, my horse hadn’t been well so we were back and forth to Clyde vets in Lanark and Nicola would chum me. So she was trying to hitch my trailer to the car and her hand wouldn’t work, she couldn't do it.

“I said you have to go get that checked out." Emma says that at first she thought it was linked to Nicola’s arthritis but unfortunately it wasn’t that.

Nicola had already had some neurological symptoms and suspected something may be going on at this point. Nicola was diagnosed very quickly With MND in May 2023 after seeing her GP and being sent onto Neurology.

According to the NHS, MND is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time. There's no cure for MND, and can significantly shorten life expectancy.

Claire said: "It is one of the worst things to be diagnosed with. I had read not long before, this article about a young Glasgow mum who was diagnosed with the condition and died. so I knew a bit about MND before Nicola found out her diagnosis."

“But for Nicola to be diagnosed with it, I couldn’t believe it. It is one of the most cruel things to be dealt with in life”

Speaking about the owners at the horse stables, she said: “She unfortunately had to then sell her horse as she couldn’t look after it anymore. We had a very kind cash donation from Jane and Hugh Hunter who own Thornton Livery Yard Edinburgh. Jane was very fond of Nicola when she was there with her horses.”

The ladies main aim is to raise awareness and raise as much money as possible to help find a treatment for MND. At the moment, there is no treatment or cure for the condition, but Nicola truly believes there will be a cure - just not in her lifetime.

The women have set up a GoFundMe for people wishing to donate, in hope that they can raise funds for the buffet at the event and everything else to go to the two charities.

Emma hopes to raise money for 'The Brain Tumour Charity' in memory of her dad, Thomas. "Dad was diagnosed with cancer in his kidney in 2008. He had his kidney removed and had the all clear five years later. But only weeks later showed signs of a neurological disorder."

Unfortunately Thomas was diagnosed with a brain tumour eight weeks later. Two days after his diagnosis, aged 58-years-old, he passed away surrounded by family.

Nicola was interviewed by Kenny Logan, a former Scottish Rugby team mate of Doddie Weir who passed away in 2022. Doddie's charity is My Name'5 Doddie Foundation that the women are raising funds for.

Nicola was at one of their events recently, she said: "They are amazing, they've changed the landscape for people with MND. Their focus is on research and finding treatments, they are just dynamic and paving the way for people with MND."

Nicola says once she was diagnosed that the foundation reached out to her, called her, checked in on her. She says everyone including Sean McGrath, the Foundation’s Medical Strategy Lead have been invaluable to her.

She says: "The foundation has grown in size, they've committed £17 million so far. They have lots of supporters because Doddie was so well loved."

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Motor neurone disease is an uncommon condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages. Nicola was diagnosed at 46-years-old last year.

She still works full time in the environment sector as a project manager. When asked about how it has been sicne her diagnosis, Nicola says "It's been very difficult, I just try and take it one day at a time and focus on what I can do. I try not to worry too much about the future."

"It is obviously very challenging, it came as a massive shock. My whole life has been running, horse-riding, skiing, camping, fitness and just being outdoors.

I had to adapt in a such a short space of time, I became noticeably weaker. But compared to most people with MND I was diagnosed very quickly."

To diagnose the condition, Nicola had tests to rule out other issues and diseases at first, an MRI, nerve conduction test and an electromyography to measure the electrical activity of your muscles.

Nicola remembers the day she was diagnosed at her first neurology appointment: " It was May 17 last year, he diagnosed there and then. The doctor said you must be really scared, what do you think it is?"

"I said I think I have Motor Neurone Disease and the doctor said I'm really sorry but you’re right."

Nicola says of her partner: "Me and my partner Paul, we hadn't been together very long. We had been friends and then became a couple. This really threw all our plans we had as a couple."

Speaking about any treatment for MND, Nicola mentions "There is one drug called Riluzole, which can extend life by 10%, but only in the last stage of the condition."

Nicola pays privately for a drug which is not available on the NHS currently. "It is a repurposed drug for kidney cancer - a low does of this drug is emerging as a new treatment for MND."

Patients United 2 End MND state on their website: 'The provisional, unconfirmed, results show a substantial reduced risk of death of between 40% to 70% within the trial period of 21 months. If the results are confirmed as positive, it is NOT a cure, however, it is possibly a significant and meaningful slowing of the disease. It would likely mean months of extra life for many patients and possibly years for some."

Nicola is excited and hopeful for their big event in August: "Claire is a force of nature, she is the ultimate businesswoman, everything she does is very successful. This is hopefully the first of many events and will grow and grow. We will definitely do another one."

The trio of women are looking for donations, gifts for the event, a buffet. If you or a business want to reach out to help in any way, please contact: Claire_beattie1@hotmail.com

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