Martin Hywood, 47, lives with limb girdle muscular dystrophy

The condition causes muscles to waste away, affecting the heart and breathing and leading to life-threatening complications

Martin has released a video titled We Need Hope to help raise funds for Muscular Dystrophy UK

A FATHER with a life-limiting muscle-wasting condition who lost the ability to walk while shielding during lockdown has issued a heartfelt video plea for help.  Martin Hywood, 47 and from Buckinghamshire, is just like many men his own age. He’s a devoted husband to wife Michelle, an adoring dad of three girls, and a die-hard football fan.

But Martin lives with a very rare muscle-wasting condition called limb girdle muscular dystrophy – a progressive and life-limiting disease that causes muscles to weaken and waste over time. It affects his heart and breathing and causes life-threatening complications. Martin’s immune system runs at about 20%, and a common cold he catches in winter time can last as long as spring. It means that he is utterly terrified of catching coronavirus.

Martin had been shielding following government guidance because he was classed as clinically extremely vulnerable. Staying indoors for so many months means he lost the ability to walk and is now unable to leave his house by himself for fear of falling over. Martin, a prolific fundraiser for Muscular Dystrophy UK, has now released a heartfelt video highlighting the reality of his condition, and asking for people’s help.

The self-professed ‘realist’ doesn’t want sympathy – instead, Martin hopes his video will inspire people to “be a little more selfless” and donate to Muscular Dystrophy UK. The charity is facing the biggest threat in in its 60 years of existence with the loss of half its forecast fundraised income – £2.8m – amid the pandemic.

Martin sits on his sofa and speaks candidly to the camera throughout his video, titled We Need Hope, which he and his friends made as a gift for the charity. Martin says: “As a family, we started to raise funds for Muscular Dystrophy UK to pay for world-class research so other families didn’t have to go through what we do on a daily basis and to give others hope.” Martin explains that now he can no longer walk, he’s “lost the ability to raise funds, I’ve lost the ability to help others, and I’ve lost the ability to support MDUK and their many events at a time when they need us the most”.

He adds: “Before the pandemic struck, we had hope, because muscles matter.

“Now we have a £2.8m funding gap, but we need to try to take care and help 70,000 people affected by these conditions in the UK.”

Martin ends his video by asking people to text MDUK7 to 70660 to give £5, because the charity’s help is more critically needed than ever by those it serves. Martin also enlisted the help of actor Ralph Ineson, star of The Office and Harry Potter, to feature in the video.

Ralph says: “For years now I’ve been inspired by my friend Martin and his bravery in his struggle with the disease muscular dystrophy. He gives me hope, and we need hope, because muscles matter.”

Martin and his team, Hywood’s Heroes, had raised £150,000 in fundraising over the years before 2020. They had a charity comedy gig planned this year which they hoped would raise a further £30,000, but the gig was cancelled amid the pandemic. This pause on fundraising activities was another source of inspiration behind Martin making the We Need Hope Video.

“I was devastated and angry and emotional about the fact I was losing the use of my legs, but I decided with all this time spent inside I should try and do something to help. Raising funds for Muscular Dystrophy UK will help younger families who have just received a diagnosis. Having somebody at the end of the phone who understands can be so helpful, so I wasabsolutely gutted when I found out that Muscular Dystrophy UK was going to miss out on so much funding. I had to help.”

Martin also explained what it’s like to have the muscle-wasting condition limb girdle muscular dystrophy.

“One evening I might be able to bend down and pick up the milk, for example, and the next day I simply can’t do it anymore. Every time I try to stand up it’s extremely painful. The pain feels like when you pull a hamstring and it causes a burning sensation. It’s that burning pain, constantly, in my legs.”

But despite the pain Martin faces daily, he doesn’t give up. Martin said: ‘I want to get people involved to help them see they can achieve more than they think can do. People should go out and make their world bigger. To get involved and be selfless would be a wonderful thing.”

The video was posted this evening on the Hywood’s Heroes Facebook account and Martin’s Twitter profile. The keen Leeds United fan also hosted a live auction on his Twitter feed @HywoodMartin. 

Catherine Woodhead, CEO of Muscular Dystrophy UK, said: “As a charity, our financial income has been hugely affected by the coronavirus pandemic this year. We desperately need vital donations so that we can continue to make every day count for people living with muscle-wasting conditions.

“That’s why we are enormously grateful to all our amazing fundraisers who have gone above and beyond during the ongoing Covid-19 crisis to raise money for Muscular Dystrophy UK. We are hugely thankful to Martin Hywood for creating such a powerful video and to actor Ralph Ineson for helping spread the message that muscles matter. A big thanks as well goes to Paul Adams and Steve Richmond, who volunteered their time and resources to film and edit the video”.

“But we can’t be complacent and, without donations, we can’t support families like Martin’s. We need people’s help more than ever before. So, if you can, please text MDUK7 to 70660 to give £5.”

NOTES

Martin’s video can be downloaded via Dropbox here. This is the second video Martin has recorded for MDUK. The first was released in 2018 and was called Muscles Matter. Martin is married to Michelle and father to three girls, Lucie (26), Olivia (14), Skye (9). They have not seen any of their extended family since March. Martin has an older brother who also lives with limb girdle muscular dystrophy. Last August, Martin was shortlisted by the national Third Sector Awards as ‘Volunteer of the Year.’ People can donate £5 by texting MDUK7 to 70660.

For more information please contact:

Alice Cachia – Senior Press Officer

07771 374 839

A.cachia@musculardystrophyuk.org

Notes to editors

About Muscular Dystrophy UK

Muscular Dystrophy UK is the charity for the 70,000 people living with muscle-wasting conditions in the UK. We bring together and support people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions. We are facing the biggest threat in our 60 years with the loss of half our forecast fundraised income (£2.8m), just when our help is most critically needed by those that we serve.

About limb girdle muscular dystrophy

Limb girdle muscular dystrophy causes muscles, particularly of the shoulders, hips and thighs, to weaken and waste over time leading to increasing disability. It can be diagnosed at any age, and varies widely between individuals – even within the same family. In some cases, it affects the muscles of the heart and breathing muscles, leading to life-threatening complications.