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Woman tells how she was given just two to five years to live at 19 years old when doctors diagnosed her with motor … |

Woman tells how she was given just two to five years to live at 19 years old when doctors diagnosed her with motor …

LUCY Lintott, 22, lives in Moray, north-east Scotland, with her parents Robert, 53, and Lydia, 54. She says:

WITH just a few words, the hospital consultant robbed me of my future.


Three years ago, Lucy Lintott was diagnosed with motor neurone disease (MND), a degenerative condition with no cure

He told me that I had motor neurone disease and my life expectancy was just two to five years.

Beside me my dad wept, but I was frozen – my mind blank with terror.

Lucy scuba diving with her dad before her diagnosis: The news of her life-limiting condition devastated the family

I’d first noticed something was wrong six months earlier in spring 2013, when I was 18.

I started tripping over my feet and my hands felt weak – I had problems grasping things sometimes. I also had to concentrate on forming my words.

I knew something wasn’t right, but I was so excited about volunteering at a camp in America that June, I put it to the back of my mind.



When I returned home three months later, I moved to Glasgow to study business at college. But I was becoming more wobbly.

I tried to hide it from friends as I didn’t want them to notice anything was wrong, but soon confessed to my parents that I was scared I had a brain tumour, so we went to see my GP.

They referred me to a neurologist and in November 2013, I was admitted to hospital for tests.

Lucy started blogging and made a bucket list: She’s ticked off 29/45 things so far, including a helicopter ride

I was terrified, but also relieved that I might finally get some answers.

The next day, the consultant told me I had motor neurone disease (MND).

I tried to focus as he explained that the rare condition causes the degeneration of the nervous system, leading to muscle weakness.

My body would slowly stop working and I’d become locked inside it until I died, as there’s no cure for the disease. I felt so overwhelmed I just wanted to go home and hide.

Lucy worked with acclaimed photographer Rankin as part of a BBC documentary

The aim of the project was to fight to change people’s views of illness

My parents broke the news to my brother Ross, 25, and sister Laura, 24, and the next day we gathered for a family consultation with a specialist.

As the doctor explained that all he could do was prescribe medication to try to slow down the progression of the illness, I forced myself to stay calm.

But when he said I’d never have kids – as my body wouldn’t cope with pregnancy – I broke down. I’d always hoped to have a family one day.

While some days I felt angry, others I was full of fear.

It was difficult giving up my independence and returning to live with my parents.

The hardest part was telling friends as I didn’t want to be seen as a victim.

But I refused to wait for the inevitable, so began blogging and created a bucket list of 45 challenges to raise money for MND Scotland.

So far I’ve ticked off 29 things, including diving at the Great Barrier Reef.

In March, I had my picture taken by the famous photographer Rankin as part of a BBC documentary about me and my fight to change people’s views of illness.

Although Lucy has to regularly rely on a wheelchair, she still hangs out with friends and goes to the gym

The producers contacted Rankin to help me show that someone with a terminal disease can look, and be, healthy.

It’s been three years now, and even though I often rely on a wheelchair, I still hang out with friends and go to the gym.

I’ve been on a date, but realised I want to spend my time with people I already love.

Of course I have bad days, but I try to hide my tears.

People have described MND as a death sentence, but I’m hopeful a cure will be found.

Until then, I’m making the most of every moment.

To donate to Lucy’s fund-raising efforts for MND Scotland, visit Lucysfight.com.


Stephen Hawking is the most famous person with motor neurone disease. His younger years and diagnosis were depicted in the critically-acclaimed film The Theory of Everything.

The Theory of Everything – First trailer
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