'My world caved in' - Suffolk footballer on his Motor Neurone Disease diagnosis

Former amateur footballer Jerry Thorpe

Former amateur footballer Jerry Thorpe was diagnosed with Motor Neurone Disease in 2019 - Credit: Donovan Blake

When well-known Suffolk footballer Jerry Thorpe was diagnosed with Motor Neurone Disease in October 2019, in his own words, his “world caved in”.

A year and a half on he is bringing the region’s former amateur footballers together to share their memories and has raised thousands for research into the incurable disease.

Here Gina Long, Dave Gooderham and Samantha Windrum share his heartbreaking story. 

As a local footballer who gave his all on the pitch he was respected by his teammates and opponents alike.

For 30 years, Jerry Thorpe was a popular figure across the local non-league football scene, playing for the likes of Bury Town, Sudbury Town, Framlingham and Clacton, and including spells with Stutton, Ransomes and Coplestonians.

His love of football was only bettered by his love for his three children.

After becoming increasingly weak over a three year period, and struggling more and more with his breathing, in October 2019 Jerry attended an appointment with the local neurology department at Ipswich Hospital.

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It was then he was finally and devastatingly diagnosed with the incurable Motor Neurone Disease (MND).

Jerry said: “It was like my world had caved in. I knew something was wrong because doctors could not get to the bottom of it and as time moved on, I was getting gradually weaker. But I never expected that... It hit me like a tonne of bricks, trying to take in the devastating news, I just left the hospital in floods of tears. I didn’t eat or sleep for two days, within three weeks, I was in a wheelchair.”

Jerry admitted that coming to terms with the diagnosis was “absolute hell”.

At the centre of his mind were his beloved three children – Benjamin, 36, Sian, 21, and 9-year-old George.

So, during lockdown last year, he decided to start to declutter his life, starting with sorting through all his old photographs.

He must have had over 6,000, a lot were of old football line-ups and other similar related photos.

It soon became clear the majority of them were either football or family related.

This gave rise to a further idea, which was to start a Facebook site encompassing old school amateur local footballers from across the region, many of who are from Ipswich, or had played amateur football.

Jerry Thorpe and his son, Benjamin

Jerry Thorpe and his son, Benjamin - Credit: Donovan Blake

Success was immediate, there are now over 900 members, with another 100 awaiting approval.  

Jerry said: “It’s been great to reconnect, in doing so we have been able to reflect on the good times we shared, the social aspect that being part of an amateur football team gave us, with the bonding and friendships continuing from 10, 20 and even 30 years ago. We have literally picked up where we left off, catching up on different live events and happenings, bringing a smile back on people’s faces”.  

The football Facebook page’s new members were asked if they would be willing to support Jerry, in helping to raise funds for MND and it was unanimously agreed they would of course do so.

This is already seen to be taking effect with over £6,000 raised. In becoming more involved with the MND Charity, it soon became clear how many people have been touched by and directly affected from this devastating disease.

One thing is for sure, MND has no boundaries.

Jerry added: “So many people have lost mums, dads, wives, husbands, sons, daughters, uncles, cousins and friends. The suffering and torment of watching a loved one fade away, sometimes very rapidly, will never leave them. They have felt angry and let down by the system, as there hasn’t been a big enough voice behind them to plead their case, and to help raise the much needed awareness. They have felt isolated and unsure of where to get the support they needed, especially for their mental health. The new football Facebook family, is changing this, the local person on the street feels that they can make a difference, their voices are now being heard. This isn’t just vital for those who have been lost to this wretched disease, but to help those suffering with it in the future.”

Jerry Thorpe, his daughter,, Sian, and son George as a baby

Jerry Thorpe, his daughter, Sian, and son George as a baby - Credit: Contributed

While the football Facebook site is good for the soul and mind, Jerry didn’t want to stop there.

Although the fundraising format has been restricted because of the Covid-19 pandemic, details will become clearer once the restrictions have been relaxed.  

Jerry added: “We have short, medium and long term goals to achieve this year. In particular, at the end of summer/early autumn there will hopefully be, subject to government restrictions being lifted, a large gathering in one of the major Ipswich parks. This will hopefully bring all the different factions together as one big family, once again raising awareness and helping raise funds.  Many people are already pledging to come from far and wide. The support from the football Facebook group has been overwhelmingly immense, not that I am surprised. It reflects the impact amateur football and sports clubs make in so many peoples lives, regardless of our ages.”

Courageous Rob Burrows has helped give MND much needed awareness, along with outstanding fundraising events that have taken place in his honour.

Jerry feels despite the recent high profile coverage, there still isn’t enough awareness of this debilitating, life changing, life shortening, harsh condition.

He said: “It is something very hard to understand. There has not been enough awareness about how serious MND is. It is a disease that literally eats away at you, from the bottom to the top. I now can’t even hold a pen or open a packet of crisps. It has been and is a living hell. I was in hospital three times over Christmas 2019 and to this day, I do not know how I made it out alive. You are constantly having a never-ending battle between your body and mind, which is often still very engaged and switched on. The mental health impact has been compounded by the effect Covid-19 has on both the sufferers, their family and their friends.  At this current time in particular, there are no cuddles, no one is allowed to come and sit with me, it’s a very lonely world I find myself in.”

Jerry Thorpe and his son, George

Jerry Thorpe and his son, George, who also loves football - Credit: Contributed

His aim to support others and raise awareness is of first and foremost importance, which is now being supported by those close to him, as well as by those who played the great game with with him during a long non-league football career.

In addition to the local community, family and friends, there has been a strong interest from a lot of Tottenham Hotspur fans who are now involved in Jerry’s awareness and fundraising for MND.

Jerry has always followed football, and supported Ipswich Town FC having always believed in supporting your local club, with Tottenham as his main team.

Ipswich Town favourite Simon Milton, who played with Jerry at Bury Town before being signed by the Super Blues, said: “Jerry was a bustling and athletic footballer and a really nice guy.
“He was a big Town fan so I even saw him when I signed for Ipswich.
“As soon as I found out that Jerry had MND, we had a good chat about some of the fundraising and awareness-raising he wants to do.
“It is typical of Jerry that he wants to turn a negative into a positive. He has loads of local contacts from playing football and I am sure everyone will rally around.”

Russell Ward, chairman of Bury Town, said: “We were very sorry to hear this news. As with any ex-player of Bury Town, we will do what we can to support them, once we know when we can be back playing football again.”

Jerry has received several videos of support from football legends John Ward, Ossie Ardiles, Glenn Hoddle, David Sheepshanks, Mark Robson, the son of Sir Bobby Robson and Cole Skuse of ITFC.

It would have been easy for Jerry to simply give up or quietly make the best of the time he has available.

But he said that would be a total waste, when he could tap into his large army of football friends – and beyond – to raise money to help others.

He said: “Within the first year of diagnosis, a third of people with MND leave us. Within the second year, over half are gone. And the third year is just a numbers game. I’m a good way through my second year so time could be short for me. There is a good chance that my 9-year-old won’t have a Dad when he is 10.
“But my outlook is, that if I do not leave my children with something to be proud of me, I haven’t done my job. I could be gone in a matter of weeks, so every day I wake up, I feel blessed, and want to do what I can to help others with MND. That’s going to be the legacy I leave, in the hope my children and the others who follow, never have to suffer as I and too many other have…”

Jerry would like to extend his heartfelt thanks to the fundraising team of Samantha Watson, Steven Swift, Phil Greenhalgh and Darren Richardson. To support Jerry’s fundraising, please visit https://jerrythorpemnd.org

Jerry has set up a private Facebook group for ex-footballers to reminisce about matches, memories, on and off the pitch. To request membership, please like Jerry’s Facebook page – www.facebook.com/jerry.thorpe.56  

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