In efforts to fundraise for motor neurone disease and show support for her mum, one Newport student and her friend will walk 26.4 miles to their favourite restaurant.
People will do a lot for love and food.
For childhood friends and sixth formers at Bishop Stortford College, Ellie Lewis, 18, and Emelia Mitchell, 17, this includes walking 26.4 miles to show “love and support” for Ellie’s mother Gilly, who lives with motor neurone disease (MND), and for a delicious Japanese meal too.
On Saturday March 20, the duo will trek from Emelia’s home in Ugley Green to Cambridge, finishing at Wagamama (the pair’s favourite restaurant) in an effort to raise funds for the Motor Neurone Disease Association (MND Association).
MND Association is Bishop Stortford College’s chosen charity for the year and the school and its community have shown their support for the event.
So far, the teenagers have raised more than £10,000, smashing their original target of £2,640 - £100 per mile.
Simon Lewis, Ellie’s dad, says this is thanks to Gilly’s “billions of fantastic friends” and the tightknit friendship group the college has fostered.
“It’s testimony to how popular and highly regarded Gilly is,” he says.
Simon says he is “really, really proud” of Ellie and Emelia, and hopes the event continues to gain support. “I’d love them to raise as much as they possibly could to help find a cure – that’s what their real target is.”
The wider community has also shown their support for the marathon walk as well. This includes Darren Taylor, Managing Director at Holroyd Components in Saffron Walden, who has made generous contributions both personally and on behalf of the business.
Lucy Hawking, daughter of the late Stephen Hawking who also lived with MND, has supported the charity drive and said: “I’m both impressed and moved by Ellie and Emelia’s dedication to raising money to tackle MND. I wish them all the best on the day and salute them for their commitment to help Ellie’s mum and other people with this condition.”
Gilly’s story
Full-time mum Gilly, who used to enjoy going for walks with friends and once ran the London Marathon, was diagnosed with MND in October 2018, aged 53, after she started tripping over.
As there is no specific test for MND, diagnosing it was a process of eliminating conditions.
Simon recalls the doctors initially thought it was a trapped nerve, adding: “Then we got the devastating news that we’ve been fighting ever since.
“There’s no road map for this disease,” he goes on to say.
“Around 50 per cent of people have lost their battle within two years of diagnosis, so Gilly is above average at the moment.”
As a progressive condition, Gilly has lost the ability to walk and her speech has also gone. To communicate, she uses a device that reads her eye movements.
“The cruellest thing about MND is that Gilly’s body is shutting down but her mind is as sharp as ever – I can’t get away with anything,” says Simon.
“I know she has dark moments, but her amazing friends lift her out of it.”
Along with two part-time nurses and a part-time carer, retired Simon cares for his wife. “My job is to keep Gilly as strong as she possibly can be and wait for medical science to catch up,” he says.
“Think back to when HIV was incurable to now, when medical science has found a way to help people live with HIV.
“That’s what we’re hoping for, and why Ellie and Emelia are pounding the street,” he adds.
As active, outdoorsy people who liked to travel, MND has restricted what the Lewises can now do as a family, including taking their much-loved dog for long walks along Norfolk beaches. Simon and Gilly’s retirement plan of travelling and “getting out and doing stuff” has also changed.
During the pandemic Simon and Gilly shielded completely. They kept their distance from friends and family, had friends drop round groceries and didn’t hug Ellie for almost a year because she was in contact with her peer group at school.
“I was very protective,” says Simon, “and it has been tough on Ellie. We have had to be very careful.”
Looking forward to better times, Simons says his family are “absolutely” going to try to do the things they haven’t been able to do since the pandemic hit.
“Gilly received two vouchers for Christmas, one to go to the beach, and the other to see a West End show,” he says.
While Gilly hasn’t decided on what show she would like to see yet, Simon says the decision will be partly based on the venue itself.
“You have to be conscious of the theatre’s facilities and if they are suitable or not,” he says. “Those things are always in the back of your mind.”
What is motor neurone disease?
Each day, six people are diagnosed with MND, a fatal, rapidly progressing disease that affects the brain and spinal cord and has no cure.
It attacks the nerves that control movement so muscles no longer work. It can leave people locked in a failing body, unable to move, talk and eventually breathe.
Over 80 per cent of people with MND will have communication difficulties, including for some, a complete loss of voice.
Around 35 per cent of people with MND experience mild cognitive changes and a further 15 per cent of people show signs of frontotemporal dementia which results in more pronounced behavioural change.
MND kills a third of people within a year of diagnosis.
It affects people from all communities.
Ellie and Emelia’s fundraising walk will take place on Saturday March 20.
To donate, visit their go fund me page, Emelia and Ellie’s marathon for MND.
For more information on MND visit mndassociation.org
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here