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Defying the ‘1,000 day disease’: How Scot with MND is thriving as she reaches 10-year survival mark

© Derek Ironside / NewslineTrailblazing MND campaigner Lucy with husband Tommy and children LJ and AR at home in Elgin.
Trailblazing MND campaigner Lucy with husband Tommy and children LJ and AR at home in Elgin.

It is called the “1,000-day disease” because too few people survive beyond that point. But one miracle mum is defying all the odds and storming into 2024 with plans for an exciting new future.

Lucy Smith is the youngest person in Scotland to be diagnosed with motor neurone disease, at the age of 19. But she is embracing the new year with one of her life’s greatest achievements under her belt: having reached the 10-year survival mark.

And the 29-year-old does it proudly holding the British Empire Medal awarded last year for her fundraising work to help research into the disease which claims the lives of most sufferers in less than three years from diagnosis.

Lucy with baby LJ just moments after he was born.

Dubbed the MND Warrior, brave Lucy – thought to be the only woman in the world to become a mother twice post-diagnosis – celebrated the landmark moment in November with a money-spinning grand ball that raised a whopping £20,000 – taking the total she has generated for research so far to over £270,000.

Now wheelchair-user Lucy, who lives in Elgin with her plumber husband Tommy Smith, 28, is embarking on an accounting degree, beginning with an HNC at Moray College.

And, in what she describes as a dream come true, she has moved out of supported residential accommodation and into a disabled-adapted bungalow so she and Tommy can finally live together with their children as a family.

The milestone

An elated Lucy – devoted mum to son LJ, aged almost four, and two-year-old daughter AR – told The Sunday Post: “I am going into 2024 on a high. I am thrilled to get to the 10-year survival mark. It is a real milestone and one of the greatest achievements of my life because, when I was diagnosed at 19, I was told I only had 18 months to live.

“Sheer stubbornness and my love for Tommy and our kids and our wider family has got me here. I have the best reasons on Earth to fight this disease.

“I was told I would not be able to have children but did. Now I cannot wait to be 30 because I was told that would not happen either. And I cannot wait to get grey hair,” she laughed.

“It is the achievement of getting older and wiser. Life is different for me. I cherish every moment and I am excited for the future.”

Lucy and Tommy with son LJ (Pic: Andrew Cawley)

MND progressively destroys the neurones that carry messages from the brain to the muscles and makes walking, talking and swallowing extremely difficult. Despite this, Lucy bulldozes through barriers and lives the best life she can.

She met Tommy at school, but they only started dating after her diagnosis. They married in May 2022 in a beautiful ceremony at Inchberry Hall near Fochabers in Morayshire – also the venue for her 10-year survival celebration.

The bride wore a full-length, off-the-shoulder white gown, while her groom was in a dress-Gordon tartan kilt. LJ – born at Aberdeen Maternity Hospital in February 2020, where his sister was born two years later – was also in the clan tartan.

Lucy – who managed the few steps down the aisle supported by her father – recalled: “It was a dream day I had never thought possible. It all feels like a miracle.”

She added: “I am so proud to receive the British Empire Medal for my fundraising work. And I started doing an accounting course in September. It’s an HNC. I am taking it a year at a time, but I am on the path to taking my degree.”

Lucy has reached the 10-year survival mark. © Derek Ironside / Newsline
Lucy has reached the 10-year survival mark.

Tommy completed his plumbing apprenticeship eight months sooner than anticipated and is, in addition to full-time work, now studying an HNC in Construction Management to progress his career. He also looks after Lucy and the children when they are not at college and nursery and when carers are not present.

Lucy, who took part in a BBC documentary to raise awareness of MND, beamed: “Ideally, I would like to become an accountant later when the kids are at school. I just love working with numbers. And we are now in a Moray Council four-bed bungalow which is disabled-adapted. It has completely changed our lives but we are fighting for more care hours to take some of the burden off Tommy so he can be Tommy the dad and not just Tommy the carer.”

Care and costs

Lucy claims she is allocated 146 care hours per week but, as she requires two carers to ensure the safe care of her and the children, it equates to 73 hours – meaning she spends from 8pm each evening in her bed with Tommy required to turn her repeatedly around the clock to avoid compression and bed sores.

The couple are also trying to save for the holiday they have never been able to afford because of the costs associated with holiday accommodation for the carers they must take with them.

Tommy said: “Everyone asks if I am proud of Lucy’s MND milestone, but I don’t see the disease, I only see Lucy. It’s hard to explain but I am beyond happy that she’s reached the 10-year point. And I am proud she got the recognition she deserves for the work she has done for MND. If anyone else was dealt the hand Lucy was dealt, they would have probably hidden away in a room for those 18 months, waiting for the end.

“But Lucy turned it into something good, something meaningful, something that will help and inspire others. Could anyone else do what Lucy does? It’s a unique scenario.

“The whole point of doing the BBC documentary, keeping medical journals and fundraising for vital research is for the benefit of others. Most importantly, Lucy gives hope to others with the condition, so that they can see there is light in the darkness. The biggest thing Lucy can give anyone is hope.”

The mum, who is fundraising despite knowing any breakthrough may not come in time to save her own life, previously told the Post: “I always felt selfish because I wanted to be a mum, and because, at the moment, this is a terminal illness. I may not be around as my babies get older. I’d be leaving Tommy as a widower.

“But then I remember our children are already getting a better start to life as they have parents who love them and love each other, and four amazing grandparents.”

And she had this message for fellow sufferers: “Fight for what you need and live for every moment.”

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