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A mum with motor neurone disease who has been given just six months to live is “heartbroken” as she can no longer pick up and cuddle her five-year-old daughter as her condition worsens.

Lisa McCready, 40, was dealt her devastating diagnosis two years ago next month – the day after husband Chris’ 40th birthday – and was initially given a prognosis of one to three years.

Her form of MND is one of the more rapid and progressive types with Chris, 41, witnessing the deterioration in real-time, and last week doctors tragically told her she now has a life expectancy of just six months.

It comes as Lisa, who lives in Trowbridge, Wiltshire, approaches the advanced stages of her condition and is unable to walk or move independently.

She’s now determined to make life-long memories for her daughter Evelyn to look back on in years to come.

Lisa has all her medicine, nutrients and fluids fed through via a PEG tube to stop her choking.

Extreme tiredness is also common, small movements result in constant pain and her voice is also disappearing.

Lisa, Chris and Evelyn enjoy a trip to the cinema ( Lisa McCready)

“Over the last three months, she’s gone downhill a little bit quicker than I’d have thought,” said Chris, who has had to cut his working hours to help look after Lisa while also maintaining an income.

“I think her voice is struggling a bit now which I find very hard to deal with, having no-one to talk to.

“You’re talking to someone who really wants to talk to you but doesn’t respond. It’s really hard.”

Also, at the heart of the family is Evelyn, who had a hard start to life herself after being born prematurely at 25 weeks and weighing just 1lb 4oz.

Lisa’s caring nature is abundantly clear – prior to her MND diagnosis, she worked tirelessly as a nursery nurse – and making sure Evelyn, who turned five last month, has a normal childhood is a priority.

Chris says watching Lisa’s deterioration is heartbreaking, but the couple are trying to make as many memories togehter as possible ( Lisa McCready)
Lisa hopes Evelyn grows up realising she can do anything she wants, no matter what is in front of her ( Lisa McCready)

A trip to Disneyland Paris is high on the bucket list, although the logistics of a trip abroad, which the family haven’t been able to enjoy together before, is becoming increasingly difficult due to Lisa’s condition, coupled with the cost involved.

But making sure the simple moments are captured on film – such as trips to the park, a day out at Legoland or playing in the garden – is something she is keen to document so Evelyn can be reminded of how wonderful her mum was as she grows up.

“I just want to enjoy her now while I can,” said Lisa, fighting back tears.

“I would love it if Evelyn could look back now or when she’s older on things we did as a family and say, for example, ‘Hey Daddy, do you remember when we went to Legoland with Mummy?’ or, ‘Mummy was really brave when we went ice skating!’

Lisa is determined to give young Evelyn the best life possible ( Lisa McCready)

“I would love it, if it’s possible, to take Evelyn to Disneyland. That is probably the main experience I want to take her on at this moment while I am able to.

“She loves princesses, Frozen and all things Disney and I know she will remember that experience with us as a family for the rest of her life, especially when I’m gone.

“I would like these sorts of experiences to help make Evelyn stronger, mentally and emotionally.

“I would like Evelyn to take away lots of positive and happy memories and to realise she can do anything she wants, no matter what is in front of her.

“Just because I’m going through a really terrible experience with my MND, it doesn’t mean she should stop having a really happy childhood that would last her a lifetime.”

With MND, messages from the motor neurones gradually stop reaching the muscles.

This causes the muscles to weaken, stiffen and waste which can affect how you walk, talk, eat, drink and breathe, according to the MND Association.

There is no cure and figures show it affects up to 5,000 adults in the UK at any one time.

This month, scientists said they have slowed and even reversed some of the devastating declines caused by MND through a new drug, although it currently only works in two per cent of patients.

Lisa and Chris celebrating Evelyn’s fifth birthday in August ( Lisa McCready)
Lisa has recently been given just six months to live ( Lisa McCready)

There is a one in 300 risk of getting MND across a lifetime and, while it can affect adults of any age, it is more prevalent in people over 50.

A number of famous faces have spoken about their battle with the condition in recent years, including rugby league star Rob Burrow who, after his diagnosis in December 2019, said: “First it comes for your voice. Then it takes your legs.

“It tries to rob you of your breath. But it can’t sap your spirit.”

The same can be said for Lisa.

“She’s lovely, she’s so polite, very friendly, she always looks after people around her ahead of herself, that’s the biggest thing,” said Chris.

“She’s always happy to help people, she’s amazing. I didn’t really deserve her.

“She’s a good mum, she’s worked with kids most of her working life, she loves little children. She’s very smiley and happy, but when she’s sad it’s hard to see.”

Living with MND and seeing the rapid deterioration has been tough for Lisa to come to terms with as she also balances being a mum and wife.

“I’m always in pain, my muscles are always twitching because they have wasted away and my nerves are trying to reconnect themselves,” she added.

Lisa’s dream is to take Evelyn to Disneyland Paris ( Lisa McCready)
Evelyn had a hard start to life herself after being born prematurely at 25 weeks and weighing just 1lb 4oz ( Lisa McCready)

“I find it really hard to get comfortable whether it would be sitting in my wheelchair or lying in bed. The hardest symptom for me is my speech. I did not want to lose my voice.

“I am frustrated because at the end of the day I am a wife to my husband and a mummy to my daughter, that’s all I ever wanted to be, which I can’t even do now.

“I can’t pick up my daughter, play or just have snuggles and find it hard to communicate with her which I find heartbreaking.

“Quite often I find it hard to think I am a mum at all these days because I can’t do much. But that’s why it’s so important for me to look forward and create memories with my family by going on trips or going to the cinema, things that I can do at the moment.

“So with that in mind, I do think of myself as a mum but a mum in a different way. I love my family and I want to enjoy them as much as possible.”

In the summer just before Lisa’s diagnosis, she began having a number of falls.

One of the first signs came during a family holiday to Devon.

The family are busy making plenty of memories ( Lisa McCready)
Lisa says losing her voice has been one of the hardest aspects of MND to deal with ( Lisa McCready)

She fell down some steps, an innocuous event at the time that was just simply put down to clumsiness.

MND is typically difficult to diagnose, so this was all put down to vertigo or severe anxiety.

But Chris pressed the issue after feeling something wasn’t right, and after being referred to a local hospital she was diagnosed with the debilitating condition.

Chris had heard about MND before – but Lisa sadly had no idea about what it meant for her.

“It wasn’t until the doctor said it’s a life-shortening illness, and at that time it was one to three years [to live], that she broke down,” he said as they try to make the most of the time they have left together.

“The initial shock was horrendous. After a couple of weeks we tried to be a bit positive about it.”

A GoFundMe page has been set-up to help Chris make crucial adjustments to the home to ensure life is a little bit more comfortable for Lisa, as well as helping pay the bills if he was to stop work and fund a potential Disneyland trip.

Some of the money will also hopefully go towards two local hospitals that helped Evelyn when she was a baby.

To donate to the fundraiser, press here.

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