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Being Mum With MND

May 4, 2022

Lucy Lintott always dreamed of having children but when she was diagnosed with Motor Neurone Disease (MND) at just 19 she was told she would never be able to have a family.

Most people with MND don’t survive beyond the first three years of diagnosis – but eight years later Lucy has two young children and plans to marry her partner Tommy later this month.

She is thought to be only the second person in the world with MND to give birth twice.

MND is a rapidly progressing terminal disease that stops the messages from the brain reaching the muscles.

The disease gradually makes gripping, walking, talking and swallowing extremely difficult – and eventually impossible.

Lucy, who grew up in the town of Garmouth, close to the Moray coast in north-east Scotland, was diagnosed at the end of 2013.

She was the youngest person in Scotland with the terminal disease, which usually affects people over 40.

Three years later, aged 22, Lucy told the BBC it was like being “slowly paralysed” and she was worried that her “hilarious personality” would slip away.

The illness meant she was using a wheelchair more as she could no longer walk unaided, and her speech was affected.

Lucy took action to record her voice so it could be used for a simulation if she lost the power of speech completely and she set about raising funds for research into the condition.

But she tells the new BBC documentary Being Mum with MND she was terrified about the future.

Although she required professional carers to help her with most tasks, Lucy was determined to move out of her parents’ home and into her own flat in the nearby town of Elgin.

“That really changed a lot of things,” she says. “I started to get independent so I could have a boy round and mum would not embarrass me.”

In 2018, Lucy reconnected with old school friend Tommy Smith. He was in the year below her at school but they were in the same modern studies class when she was in sixth year.

Tommy says he was very shy but Lucy was “loud as hell” and her laugh could be heard from three classrooms away.

He could not resist her beaming smile and massive eyes. Lucy was attracted to his tight shirts and trousers.

The pair became a couple.

“I did not have to protect myself,” Lucy says. “He knew what he was getting into. He’s had to deal with people pointing out I have MND.”

Tommy proposed in 2019 and in September that year the pair announced that Lucy was pregnant.

Her dad Robert says there were concerns for Lucy’s wellbeing, as well as the child. The risk for Lucy was higher because they did not know how her muscles would react.

But she said: “The rewards of being parents outweigh the risks.”

On 13 February 2020, Lucy gave birth to a baby son, who they call LJ in public.

Tommy says she took to be being a mother like a duck to water, although she has to work with a team of carers to look after LJ.

“Working with carers is very much me explaining and describing how I like things done,” Lucy says.

“It’s a very give-and-take relationship. Basically they are like my arms.”

Tommy says: “Even though she is using someone else to do it, it is her giving the instructions

“There are a lot of people who did write her off. A lot of people said you can’t do this. Lucy is doing a fantastic job. She does a way better job than I do.”

Soon after LJ was born the Covid pandemic hit. Lucy had to shield and the couple had to postpone their wedding.

At the height of the pandemic she had to move back to her parents’ home in order to protect her health and still receive the care she needed.

But in May last year, Lucy and Tommy announced they were expecting a daughter.

Lucy’s mum Lydia said her daughter had always wanted to have children, and that it had been “just lovely” when LJ came along.

“But when they announced they were having another, we were like, ‘Oh my God, what have you done’?” said Lydia.

The couple’s daughter, who they are calling AR, was born just after Christmas.

“The birth was really hard and scary but we are both here safe and that’s the main thing,” Lucy says.

“She will definitely be the last one. I genuinely don’t think my body would handle it again.”

Lucy says she relies heavily on carers to help with her children, but she is the one constant in their lives and they know she is their mother.

“I’m proud that motherhood has come pretty easily to me even though I am disabled.” she says.

“If could do it all myself physically I would.

“I don’t enjoy watching other people with my kid.”

Lucy plans to finally marry Tommy this month and then wants to spend as much time as possible with her family.

“I’m not materialistic,” she says. “I am more about family and spending time with my loved ones because I don’t know how long I have got left.

“I’m very grateful. I know I am one of the very few people with MND who could have a kid, let alone two. I don’t take that for granted.”

Being Mum With MND is on BBC Scotland at 22:00 on Tuesday 3 May.

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