Years ago Andrew Saffer, 37, and childhood friend Robert Davidson vowed to run the London Marathon together - before the cruel degenerative disease took Robert's life in December 2016, just 21 months after diagnosis.
In the months before he died, Robert set up the Robert Sinclair Davidson Foundation, to help young families struggling financially with a terminal condition, and Andrew is now preparing to run the 26.2 mile course on its revised date in October in aid of the charity, which he is now also vice-chairman of.
He said: "A marathon was always one of those things we said we would do together.
"It wasn't about the marathon - I have no interest in running a marathon. I despise running, running isn't for me. When he was diagnosed, I started running and trying to enter the London or New York marathons but never got a place. But his father entered London's to get a charity place a couple of years ago and out of nowhere we were given a place this year."
Andrew said it was important to continue to fundraise for the charity which meant so much to Robert.
He said: "It was his wish to help young families going through life limiting, terminal illnesses that are struggling financially.
"He really wanted to help people that were in a similar position to him. It wasn't about MND, it was about a young family dealing with awful news that are struggling, like they need this chair or this piece of equipment.
"Robert told some of his friends that he wanted them to join the committee. No-one said no. The committee is made up of friends, his cousins and his mum and dad.
"It helps to know I'm helping people in Robert's name. He's not with us but actually it's him that's helping people. It's a way to remember him."
Andrew and Robert first met at the age of two, going to the same nursery together in Leeds and went on to be pupils together at Richmond House and The Grammar School at Leeds.
They also both went to university in Newcastle, where Robert read law and eventually moved to London where he became a partner in a law firm.
The pair remained close and would chat often and in March 2015, after noticing some slurred speech, Robert rang Andrew to tell him he had been diagnosed with motor neurone disease.
Andrew said: "I will never forget. I was parking up at work when he told me. I remember just crying in my car. It was just frightening."
But he said the way Robert dealt with his terminal condition was truly inspiring and has changed his entire outlook on life.
"He had a wicked sense of humour. He would make fun of himself and the people around him but he was a character. He never lost that sense of humour. Over the two years that he was with his diagnosis, he only moaned to me once.
'I think about him most days. He gave me a new outlook on life. The positive manner he had, before he was in a chair, after he was in a chair, he just refused to let it get him down."
Robert went on to have a daughter, Maya, with his wife Sariet, after his diagnosis and although he was never able to hold her - due to his condition - she would be lifted up to his level so she could touch his face.
He sadly died shortly before her first birthday.
Andrew said: "You could see him tearing up watching her. You could see how happy he was just watching her doing things."
Despite the current coronavirus lockdown, Andrew is planning to return to training as soon as possible and is aiming for a four-hour run - and to raise as much money as possible - when it comes to the big day.
"My intention is still to run and run hard. Robert would want to see me struggle and push myself. He had a vicious sense of humour. He would take real joy in my pain."
Robert's dad Michael Davidson, of Alwoodley, said the charity has grown in the years following his son's death, reaching more and more people including developing links with St Gemma's Hospice in Moortown.
He said: "It really is going from strength to strength.
"We have raised quite a lot of money and done some amazing things, changing people's lives. That's very comforting both to myself and my wife Suzanne.
"It's massively important to me. It's a way of honouring my son's memory and is the only good thing to come out of this terrible tragedy that has befallen my family.
"Losing a child, you are damaged forever. You just have to get on with it, you have no choice. But Robert's charity is a way that I can sort of deal with it."
To sponsor Andrew's marathon run visit his fundraising page here or search 'Andrew Saffer' on https://uk.virginmoneygiving.com.
For more information on the charity visit http://www.therobertsinclairdavidsonfoundation.org.
A poem, written by Robert, features on YouTube with an introduction by A-list actor Eddie Redmayne, who played Stephen Hawking, who also had MND, in The Theory of Everything.
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