‘We are so proud of what he did, but sad he isn’t here to see it’ says parents of David Greaves who died aged 31 from MND

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This week a very special children’s book has been published posthumously by the family of an extraordinary young man. Catherine Scott reports.

David Greaves had his whole life in front of him. He had a zest for life which was infectious.

He was an ultra-marathon runner and Iron Man triathlete with his entire life ahead of him.

But, a month after his 30th birthday, in June 2015, David was diagnosed with Motor Neurone Disease. MND is a devastating neurodegenerative condition which causes progressive muscle paralysis and a dramatically shortened life expectancy.

MND kills more than a third of people within a year of diagnosis, and more than half within two years. At present there is no treatment or cure.

For David, the course of the disease was swift and cruel.

Within five months he was unable to use his hands and after nine he couldn’t walk. Towards the end of his life he was unable to talk, eat or breathe without the assistance of a ventilator. David passed away in September 2016 – a week after his first wedding anniversary and 15 months after his diagnosis.

But, in the 15 months he had after diagnosis, this courageous young man made sure that his last months were spent pushing himself to the limit both physically and emotionally and above all helping others by raising thousands of pounds for Motor Neurone disease

David and his wife Philippa, who he married shortly after his diagnosis, faced the disease head on.

In December 2015 they raised more than £12,000 for the MND Association, by climbing Mount Kilimanjaro – at a time when David had already lost the use of his hands and needed assistance for walking.

This was the start of the 2fingers2MND team which has now topped an incredible £75,000 thanks to his army of friends and his loving family all for the Motor Neurone Disease Association.

David’s’ warmth and generosity of spirit, and his love of travel and adventure led him to make friends around the world with people from all walks of life.

Despite the progressive nature of his illness David was determined to complete a series of children’s books he had started to write.

As he lost the use of his arms and speech he finished his collection of children’s books using revolutionary Eye Gaze technology which allowed him to type by tracking the movement of his eyes.

Although he died before the books were published, his wife and his parents were determined to finish what he started.

“In his will he asked that we go ahead and publish his books and Andrew has worked tirelessly to do so even though it is a complex process,” says David’s mum Sarah. “We self-published, but even so it is still expensive.”

And, on Tuesday, the first of his nine children’s books, Mr Snuffles’ Birthday by David Greaves and illustrated by Emily Wallis, was published by Clink Street Publishing in hardback and ebook.

“It is a beautiful book written in verse to be read out loud,” says Sarah.

“David and his elder brother Peter grew up surrounded by books from an early age and they loved them. David wrote an amazing poem when he was about 12.

“He also loved children and was determined to write the books despite him losing the use of his hands and arms quite quickly.”

Yesterday would have been David’s 33rd birthday and it was their aim to get Mr Snuffles published before that date, which they achieved.

“It was a bittersweet day,” says Sarah. “We are so proud of what David achieved but so sad that he isn’t here to see it.”

David was born in Pontefract but his parents moved to the Peak District when the boys were young to live in a Quaker Community.

“Even as a little boy, he really had empathy for other people and seemed to make friends so easily,” recalls his mum. “He was really into sport and had so much energy – he was always getting into scrapes and was a real chatterbox. I remember one of his catchphrases was ‘change of plan mum’ when I was supposed to be picking him up from somewhere or other – MND has been the biggest change of plan.”

After school he read history at Newcastle University followed by an MA at Sheffield,

“He always loved writing and travelling and spent time teaching English as a foreign language in Spain which he loved.” He moved to London where he met his future wife, Philippa.

But in 2014 he started to suffer pains in his hands and would fall inexplicably. During a family holiday Sarah said she became increasingly concerned about her youngest son and on his return to the UK he saw a number of GPs.

“He thought he may have ME or chronic fatigue, but I was really worried. The one thing I really just hoped it wasn’t was MND.” But after eventually pushing to see a neurologist and undergoing a host of tests Sarah’s worst nightmare was realised.

“He had only just turned 30 and had his whole life ahead of him. He had such potential, he was such an incredible person.”

But rather than sitting and feeling sorry for himself David decided he wanted to spend the time he had left doing things for others. “He proposed to Philippa and they got married in the most romantic ceremony. Then they decided they were going to climb Kilimanjaro for the MNDA who had been such a support to us.”

On his return to the UK David’s health deteriorated and he was nursed at home by Philippa, Peter and his friend Ben.

“Even at the end he was thinking of others, he invited all his friends to visit him and had a big screen which just said ‘I love you all’ on it. That was David.”

The MND Association fund and promote research that brings us closer to a cure for MND. They also provide support and provide care for people with MND, their families and carers. 


www.mndassociation.org

www.justgiving.com/teams/2Fingers2MND

Mr Snuffles’ Birthday by David Greaves and published by Clink Street Publishing is available to order through all good bookshops priced £14.99 or from amazon.co.uk

David Greaves also published a book in 2015 commissioned by Friends of the Earth. The Homeless Bumblebee is set to be republished to coincide with the EU’s ban on neonicotinoids, chemicals that are harmful to bees.