A SADDLEWORTH man diagnosed with motor neurone disease just three weeks after he got married will see Kevin Sinfield’s incredible fundraising effort come virtually to his doorstep.
But that highlights a major problem for Dwayne Wells as friends and family, including wife Kerry and 11-year-old daughter Evalyn, attempt to raise £50,000 to help him get out of home easily.
At the moment, it can take up to an hour for the 38-year-old to enter and leave his Dobcross property because of the number of steps.
However, the solution is not as easy as putting in a ramp – the gradient means a platform lift must be installed, meaning the high cost.
Yet there is no let-up in the family’s fundraising and with the help of nine ‘reindeer’ pulling his ‘sleigh’, he will take part in the area’s Santa Dash on Saturday, December 7.
It is also hoped Sinfield, who is starting it as part of the final leg of his ‘Running Home for Christmas’ challenge to raise funds for MND charities, can link up with him and bring even more focus.
Dwayne is still doing his high-powered job at bus firm Arriva Yorkshire from his Wall Hill Road home after his diagnosis in June last year.
However, mother-in-law Justine Theaker, who helps out with feeding and toilet requirements, spelled out what the condition means for him and his family.
She said: “At the front of the house, there’s eight steps, then another two, then another two at the side of the house – plus the steepness of the road. It’s pretty much the same incline at the back. There are another 12 steps to get to the top drive.
“Dobcross also has its own micro-climate, so if there’s ice anywhere, it particularly gets it here, especially on this hill. It’s precarious to say the least.
“Even with the lightest frost, it’s treacherous on either set of steps, it’s a real challenge even when you’re fit and heathy.
“They can’t ramp it as it’s too steep, so the plan is to change the steps, making them longer and less steep and then to get a platform lift along them, so the wheelchair can get on.
“That’s why it’s so expensive as you’ll have all the excavation work to make it accessible for the new steps and then the lift. Just the excavation work come to about £23,000 – that’s before they put in the foundations, then the lift.
“At the moment, we’re looking at £53,000 just to get in and out of the house and Dwayne is becoming more socially isolated.
“When he arrived back after three days in London an awards ceremony, he became overwhelmed as he was just so tired and said, ‘I just don’t have it in me. You’re going to have to leave me here.’
“I said, ‘You’ve got no choice. It’s minus four already at 8pm.’ It’s taking us an hour to get in and out of the house and because of the energy he uses, he’s just wiped out.
“These adaptations are vital. He won’t be able to get in and out of the house.”
Dwayne and Kerry, 36, are trying to adapt as best they can after the devastating diagnosis, which came after his first signs showed were in his right hand that he initially put down to carpal tunnel syndrome.
But he has already said he cannot join a full family Christmas Day in Delph because of the access issues from his own home and knowing how exhausted he will be.
“That shows it’s not just vital, it’s absolutely essential,” physiotherapist Justine added. “Doctors’ appointments, hospital appointments, opticians, he needs to go out and we’re struggling.
“They had just got back from honeymoon when he was diagnosed, on Wednesday, June 13. I remember it like it was yesterday. I was on a platform at Leeds station when Kerry phoned me.
“After he first showed symptoms, I suggested wore a splint, which he did and four months before the wedding, I told him it’s non-negotiable to look at it. I knew exactly what was going on and said, ‘You need to get some investigations done. Get to your GP.’
“The GP said it was nerve entrapment coming from his neck. I knew it wasn’t and nerve conduction tests confirmed it’s MND.
“His hand was twitching. Other than that, that was it. Now Kerry’s his primary carer, she’s his everything.”
As the family ‘wraps around’ as Kerry has a high-ranking job at rail company TransPennine Express – also helping Evalyn as she is ‘caught up in all this horrendousness’ – fundraising efforts are now being made for the family after more general ones for the Motor Neurone Disease Association.
Part of that will see them do the Santa Dash but with Sinfield passing the end of Wall Hill Road as he does the final seven-kilometre block of his fifth physical challenge, it is hoped they can link up.
Contact has been made with the team and they hope to meet the man who has raised millions of pounds in the name of former Leeds Rhinos rugby league team-mate Rob Burrow.
“As a family, the two of them are absolute superstars,” Justine told Saddleworth Independent. “They’re battling every day, when there’s another challenge.
“That honeymoon period after being married has been completely shattered. All the mystique of being a new, young couple has given when she’s having to provide all personal care for him.
“It doesn’t bear thinking about.
“Kerry’s been in touch with Kevin. What he’s done is absolutely phenomenal. He’s a hero for everybody.
“If you’d mentioned MND even five years ago, it wouldn’t have landed with many people. Now because of all the work Kevin’s done, it’s raised awareness so phenomenally.
“As soon as you say MND, people know now. That awareness is really important. Kevin’s been instrumental in boosting funds, which will help with research as there’s very little, if any, treatment for it.
“There’s now a licensed treatment that’s known to be effective for the genetic variant of it. It’s not effective for Dwayne’s condition but for others it will help immeasurably.
“Without the research, there’s no hope. At least now there is some. This wouldn’t have happened without the fundraising and more people knowing about it.”
*YOU can donate to the appeal to raise £50,000 to help Dwayne by clicking https://www.justgiving.com/crowdfunding/Purple-Dwayne-wells?utm_term=dJBZPwz5z or by scanning the QR code in this article.
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