IT has been a “surreal” year for Scotland’s youngest Motor Neurone Disease sufferer Lucy Lintott.
After she was diagnosed with the incurable disease at the age of 19, she was told that 90 per cent of patients die within three years of their diagnosis.
Yet almost a decade later, she walked down the aisle and married Tommy Smith, the father of her two miracle children.
However, her “surreal” year was solidified upon receiving a BEM for her incredible dedication to raising money for research, as well as paving the way for a different perception of MND.
“A lot of people, when they are diagnosed with MND, they think it is like a death sentence,” the newly wedded Mrs Smith said.
“Being 19 when I was diagnosed, that wasn’t the way I wanted to see it.
“Over the last nine years, I have raised a lot of money and I now have a three-year-old and a one-year-old. I got married to someone who I started dating after I had MND.”
The 28-year-old is thought to be the first woman in the world with the disease to give birth twice after diagnosis.
In May of this year, the wheelchair user even managed to walk down the aisle with the help of her father.
Speaking after receiving the “shocking” honour at the end of the year, she said: “I am hoping next year will be a nice boring year.”
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Mrs Smith has helped raise over £200,000 with a series of fundraising initiatives but believes there is always more to be done.
“I think up until a cure is found there won’t be enough attention or money,” she said.
“Doddie Weir has left behind a legacy and Rob Burrows is doing the same for everybody with MND. They have raised the profile so high.”
Both rugby players became dedicated campaigners after they were diagnosed with the disease which sadly claimed the life of the Scottish legend earlier this year.
The mother-of-two wishes to spread a message of hope to others diagnosed with MND.
She added: “Hopefully, one day somebody won’t be as confused when they get their diagnosis as I was. Back then there was no higher profile, there was just Stephen Hawking.”
“When I was diagnosed, I was told that I would never have kids. To have two of them - I know how lucky I am.
“Being disabled, I just take every day as it comes, and I am grateful for each one I get.”
She is now backing a national campaign for accessible housing for others diagnosed with the disease after struggling to find a suitable home in Moray for her needs.
MND Scotland’s 'No Time to Lose’ campaign is calling for a country-wide definition of appropriate accessible housing to ensure other sufferers do not need to waste precious time finding wheelchair-suitable housing.
Mrs Smith said: “There just isn’t enough disabled housing and nobody really builds bungalows.
“Obviously as a family of four that’s what we need, otherwise I won’t be able to get to the kids’ rooms.
“I couldn’t believe how few bungalows there are and they are 100 grand more expensive than if we bought a two-floor house.”
The recent campaign highlights that the current processes for home adaptations and allocation of accessible housing is not working for people with rapidly progressive terminal illnesses.
Speaking on her determination to continue fighting the incurable disease, she added: “I am pretty sure my parents will tell you I am just downright stubborn.”
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