Families affected by MND say urgent support is needed
It follows Kevin Sinfeild completing stage one of his 7 in 7 in 7 challenge, raising awareness for Motor Neurone Disease.
As hundreds lined the streets of Suffolk to welcome Kevin Sinfield on his latest ultra-marathon challenge, the cheers masked a quieter truth running through the crowd for families living with Motor Neurone Disease (MND) right now, the system is struggling to keep pace with a condition that steals abilities far quicker than help can be arranged.
Sinfield’s visit to the county was part of his 6th endurance challenge for the Motor Neurone Disease Association (MNDA), a movement that has now raised more than £10 million. More on the challenge can be found here.
"The disease doesn’t discriminate"
For many gathered on Monday morning, including those directly affected by MND, the former rugby star’s efforts are more than inspirational; they’re a sign of hope.
“It’s brilliant to see this amount of support,” said Stephanie White, Community Fundraising Manager for the MNDA in the East. “The local community have really come out today, and speaking to people, hearing how they’ve been affected, just shows that the disease doesn’t discriminate.”
White says the funds raised are being used for research, family support and grants for vital equipment, support which we've been told is increasingly necessary because of long delays elsewhere.
White explained that “MND progresses so rapidly,” she said. “There is help out there from local authorities and the NHS, but wait lists can be long. The MND Association can step in to help where the wait is too long.”
Families have told us this gap in the system, the weeks and months people say they do not have, is where the pain sits for many families.
“He’s gone from 6ft 3 and strong to unable to walk. And we can’t even get a shower room”
For Tash Deverell, whose brother Dylan was diagnosed in July, the pace of decline has been brutal.
“Since July, it’s taken so much from him,” she said. “He’s gone from being a strapping six-foot-three strong male to not being able to walk. It’s devastating.”
But alongside the emotional toll has come the battle to secure basic home adaptations.
“One of the hardest things is struggling to get anything in place at home,” she said. “He desperately needs a ground-floor bedroom and shower room, but it’s going to come too late. Recently when his wife asked for help with showering, the response was ‘use baby wipes’ or ‘go to the leisure centre’. That’s just not acceptable in this day and age.”
Her plea is simple: while fundraising for research is crucial, the immediate needs of people living with the disease are not being met.
“People who are living with MND need help urgently. That’s my biggest plea.”
Even so, Deverell says seeing Sinfield arrive brought a surge of emotion.
“He’s incredible. Thank goodness for Kevin. He’s spearheading the campaign; there’s no one else doing what he’s doing.”
“The worst day of your life”
Among the volunteers welcoming Sinfield was Jackie Rayner, whose husband Paul died from MND three years ago.
“He was diagnosed in March 2021 and passed away 18 months later,” she said quietly. “It was life-changing. Horrendous. The worst day of your life.”
Rayner, a registered nurse, says she recognised the symptoms long before anyone confirmed them.
“I was looking everything up. Every time, it pointed to MND. When we finally went to the appointment, I knew. The doctor asked me if I knew what it was, and I said ‘yes, but I can’t say it’. I couldn’t even say the words.”
She said once the diagnosis came, the support groups run by MNDA became a lifeline.
“You don’t feel alone when they’re there to help. Even when Paul couldn’t get to meetings, I’d go without him. People there understand what you’re going through. You can just be yourself.”
She smiled as Sinfield arrived at the rugby club saying:
“He’s absolutely wonderful, raising money, raising awareness. We’re all so grateful for what he does. It gives hope. There’s got to be a cure out there. You just need the money for research.”
“There’s no end you can adjust to”
James Trott, who lives with MND and has raised around £25,000 since his diagnosis, he told us the progress of the disease is unpredictable and relentless.
“With MND you never know, there’s not an end you can adjust to,” he said. “I can get used to some symptoms, and then one day something else changes that I’m not prepared for. It’s like going through the diagnosis all over again.”
Trott walked out ahead of Sinfield as he began the run, an opportunity given to him by the MNDA, recognising his fundraising efforts, including multiple charity events and even two climbs up Snowdon.
“Compared to Kevin, it’s a drop in the ocean,” he said modestly.
The stories in Bury St Edmunds all have an underlying theme of concern that while research funding is vital for the long-term future, families in crisis today say they're facing delays that profoundly affect dignity, safety and quality of life.
“Hope is what keeps people going”
“It’s wonderful to see this support,” said White from MNDA. “But the reality is, families need help right now. Our work, and the money raised, makes a difference, but more is needed.”
The cheers for Sinfield may have been loud, but the message from families was louder still:
Support must come faster.