Young Lincolnshire woman’s race for a cure after getting news she has Motor Neurone Disease gene

A young woman is planning a series of fundraisers having been dealt the double blow of losing her dad to Motor Neurone’s Disease then testing positive for the gene for the degenerative condition too.

Zoe Berry with her mum. Maria Berry. EMN-211115-171833001

Zoe Berry, 22, from Ruskington, is raising money for the Motor Neurones Disease Association in memory of her dad, Darren Edwards, to help find a cure.

Zoe says: “I’ve always known there would be a risk of me having it, it’s always been 50/50 so I think I’ve always thought about it a lot.

“When I got the confirmation that I did have it, it was a shock and my heart broke all over again, but it gave me even more motivation and drive to get out there and be proactive about my fundraising.”

Zoe Berry's dad, Darren Edwards, who died from MND. EMN-211115-181241001

MND, a condition that affects the brain and nerves and affects 5,000 people in the UK, has been in the national news with stories of well-known rugby stars Rob Burrow and Doddie Weir being affected.

Zoe received confirmation on October 20 and her family took the news badly, especially mum, Maria.

Zoe says: “I’ve never seen her cry like that before. I think the most scary part for me is the not knowing what or when anything will happen.”

She said that the MNDA heavily relies on donations and so she has set up a Justgiving page and is doing 3000 squats in November, as well as a charity raffle being drawn on December 11 with plenty of prizes from local businesses. Next year Zoe is taking part with family and friends in a ‘tough mudder’ at Belvoir Castle and then she and friend Kyle are hoping to do a sky dive in the summer.

She added: “I’m now not only fundraising but taking part in clinical trials alongside my full time job with a government contractor to try and help in every way I can.”

The government has just announced it is investing £50 million into motor neurone disease research to find a cure.

Zoe said: “I want to raise the awareness of this awful disease that is affecting me and my family as well as people like Rob Burrow.”

She is looking forward to doing the tough mudder with family, but less eager for the sky dive as she has a fear of falling. “I want to conquer the fear, and what better way to do it than jumping out of a plane?”

In 2016 Zoe swam 5,555 metres of Sleaford pool for MNDA and writes a blog about her journey so far. Her fundraising page is:

Zoe’s mum said she was “totally broken” on hearing the news that her daughter had the MND gene. “The thought that no parent should have to watch their child die was imprinted in my head.

“My world was shattered hearing the genetics lady say those words ‘your results are positive you are carrying the MND gene expansion’. Zoë is my world. I can honestly say this was the worse news I’ve ever had.

“My aim now is to help Zoe to fulfil her dreams, do everything we can for her to make life the best it can be, we don’t know how long she has before symptoms start to become debilitating, so for now we live every day as if it was the last.”

The government recently declined to give a grant to the Motor Neurone Disease Association, something that had shocked Zoe and her family, as well as others banking on it for a step forward. Buton Monday the government said it is to invest £375 million over the next five years to improve understanding and treatment for a range of neurodegenerative diseases including at least £50 million for motor neurone disease to develop and test treatments and improve care, a better quality of life for sufferers.

A new NIHR Research Unit will be set up to coordinate research applications, encouraging innovative studies with the ultimate goal of finding a cure.