AT HER daughter’s wedding, Christine Sweeney noticed her fingers were not quite working properly, as she tried to pin on her buttonhole flowers.

It was a little thing, and she may not have really worried about it, had it not been for the slight slurring of her speech she had picked up on in recent weeks.

“Tests, over a number of months, to do with stress, anxiety, other neurological conditions, were carried out but nothing prepared our family for the news we received on June 30, 2016,” explains Christine’s son David.

“I had just arrived in the staff car park at work, and will never forget speaking to my dad on the phone, and the shock and disbelief I felt when he told me it was Motor Neurone Disease.”

That morning, David left work straight away to be with his mum.

“Despite all of the emotions, and although we now had a diagnosis, Mum hadn’t changed overnight, and we still had many fun times ahead of us all,” he says.

“From that day on, my mum decided this was a battle she was going to face head on, and she would maximise every minute that she had with her family.”

Glasgow Times:

David has written a moving and frank blog for MND Scotland, the charity which supported Christine and her family as they struggled to come to terms with her condition.

Next year, the 37-year-old pilot, who lives in Bridge of Weir with his wife Lynsey, five-year-old son Reid and daughter Elise, three, plans to take on his biggest fundraising challenge yet – a punishing 30-mile trek through the Himalayas.

“MND Scotland talked us through so many things that would help us as a family, from welfare benefits to counselling services,” says David.

Christine and her husband Phelim regularly attended local MND meet-ups.

“My mum was quite nervous about going to the first one, but she was received a very warm welcome,” adds David. “She quickly appreciated the benefit of the advice shared, the comfort in knowing that she was not in this alone, and ultimately she made many great friends there.”

Glasgow Times:

Christine, long-term Glasgow airport employee, accomplished flower-arranger (with her own business) and keen golfer, was determined to continue living life to the full post-diagnosis, says her son.

“My parents had several foreign holidays, discovering hotels and accommodations that were specially equipped for people with mobility issues, we had wonderful family breaks in the MND Scotland caravan and lodge in Oban and St Andrews respectively and my mum continued to play golf long after her diagnosis, getting her clubs adapted with arthritic grips to prolong her ability to play,” says David.

“As a family, we were trying to stay a step ahead of the condition.”

One of the first things Christine did was to ‘bank’ her voice, recording different phrases and words into a computer which were then processed and turned into a voice file.

“It meant my mum could speak with her own voice for the rest of her life,” says David. “My mum saw every aspect of MND as a hurdle to be leapt over, and a challenge to be overcome. Her positivity and lust for life was evident to everyone she met. Caring for her was a pleasure… she was always smiling and laughing.”

Two year’s after Christine’s diagnosis, Phelim – who had recently retired and cared for his wife on a full-time basis - was diagnosed with a malignant stage four brain tumour.

“It came as a complete shock to us all, as my dad was such a pillar of strength,” says David. “He had surgery straight away, then radiotherapy. Unfortunately, the cancer was very aggressive, and just over six months later he passed away peacefully at home, with his wife and his children by his side.”

Read more: Groundbreaking MND clinical trial launched in Scotland

David admits the family felt ‘numb’ after Phelim’s death.

“We were stunned,” he recalls. “My mum’s strength, in what was an unbelievably cruel situation, inspired us all. She held the family together, despite her own ailing health.”

With help from MND Scotland, the family secured a package of care for Christine which would help her to stay at home with as much independence as possible.

Glasgow Times:

“We had continuous support from the charity throughout,” says a grateful David, “but most especially in the time after Dad passed away. The counselling service provided wonderful comfort and understanding in those dark days.”

Just over a year later, Christine died, aged 64.

“As difficult as it was losing her in such tragic circumstances, we all realised how well she had lived her life, in particular after her diagnosis,” says David. “At every twist and turn of Mum’s MND journey, MND Scotland were there for us. Now it is time for me to do all I can for them.”

Read more: Tributes for Govan firefighter who has died after MND battle

Iain McWhirter, MND Scotland’s head of fundraising, said “I’d like to thank David for speaking out and sharing his experience. Losing both parents within the space of a year is something no family should have to go through.

“It’s because of supporters like David we can continue providing vital practical, emotional and financial support to people affected by MND in Scotland, as well as powering cutting-edge research towards a cure.”

To support David, visit his Just Giving page. More information on MND Scotland is available from the charity’s website at