‘Dad died six months after being diagnosed with MND, but Marie Curie helped him so much'
Ahead of Global MND Awareness Day on June 21, Jacqueline King, from Ballywalter, is raising awareness of the disease and the work of Marie Curie, who cared for her dad, Hubert McConnell, before his death in 2017.
Almost eight years on, she says her family 'didn't know enough' about MND but that the kindness of the staff at the Marie Curie Hospice in Belfast was a comfort to her dad and the whole family at a very difficult time.
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Times
15 hours ago
- Times
Revolutionary MND drug should be given to all who need it
I know all too well the devastating impact of motor neurone disease (MND), a fatal disease that kills a third of people within a year of diagnosis, and more than half within two years. My son Rob inspired the nation through the courage he showed in sharing his story of having MND. In doing so, he helped to raise millions of pounds for research to help us towards a cure. Sadly, an effective treatment for this horrific disease didn't come in time for Rob. And a year on from his death, the same is still true for the vast majority of people with MND. But for the one in every 50 whose disease is caused by a particular genetic change, there is now a treatment that works. It's called tofersen, and it dramatically slows, even pauses, the progression of MND. It means that people taking it can now dare to dream and hope for many years of life. Tofersen has already been approved in the US and the EU, and in the UK is part of the way through the NHS approval process. While we wait for a decision, the company behind it, Biogen, is giving it for free to people who need it. This is a lifeline. People with MND simply don't have time to wait. The good news is that most people who could benefit from tofersen are now getting it. But shockingly, a small number — the MND Association estimates there are about 12 — have been told that their local NHS won't give it to them, even though the drug is free. The reason? They say they don't have the staff and bed space needed to administer it once a month. The MND Association has asked the government to intervene. But the government says it is down to individual NHS bodies, and so it can't get involved. This means that if you happen to be in an area where the local NHS will give you the drug, you get to live. If you don't, your condition will continue to deteriorate. There's nothing I would not have done to save my son, so for some people to know there's a treatment at long last — a free one — but not to be able to access it is just unbearable to think about. Not only is this tragic, but it's grossly unfair. It goes against the NHS Constitution's commitment to put the needs of patients before organisational boundaries. I was deeply touched by Keir Starmer calling those who carry on the fight for a cure for MND in Rob's memory as 'the best of our country'. He's right. They are. But when I think about the best of our country, I think about compassion and a sense of fairness. I'm asking the prime minister to act today to stop other families going through what I've gone through. He can tell the NHS to give everyone who could benefit from tofersen equal access to it. He should do so. Sign the Motor Neurone Disease Association's petition at
Daily Mirror
2 days ago
- Daily Mirror
Couple who overspent £150K on renovation set up fundraiser in bid to finish it
Mary and Sean Davies begun the conversion of a huge water tower in 2021 armed with what they hopes was a big enough budget to turn it into a huge home but problems were ahead A couple say they were left with no other choice but to set up a GoFundMe page after going £150,000 over budget on their dream home renovation. Mary and Sean Davies have spent more than four years transforming a Second World War water tower into a seven-bedroom, four bathroom property. They bought more than an acre of land at the disused RAF Hospital Nocton Hall site for £25,000 in 2018 but the project has not been without its problems. Mary, 57, and Sean, 55, took on the huge conversion of the 1940s water tower in Lincolnshire in 2021 and had an £350,000 budget but the money soon ran out. The couple, who have five children and five grandchildren, were forced to temporarily live in a caravan while the site was uninhabitable and the issues didn't stop there. After "unforeseen" renovation costs pushed them well over budget, they set up a GoFundMe page for support to finish the build, which they believe will now cost around £500,000. So far, just over £6,000 has been raised but they hope that the work will now be completed by the end of summer, with only the renovations on the top three floors of the five-storey tower going ahead. Following Sean's diagnosis with motor neurone disease (MND) in March 2023, an incurable condition that progressively damages parts of the nervous system, they are eager to finish the project so he can enjoy the fruits of their labour before his condition worsens, the ManchesterEveningNews report. "The sooner it's all finished, the sooner we can enjoy it," Mary told PA Real Life. "Sean's diagnosis made us even more determined to get the project completed. For him to be able to experience what we have created here in its fullest and reach the top of the tower, he needs to be mobile. He's mobile now, but we don't know how long for." Having previously lived in council properties, the couple were drawn to the RAF site by the abundance of space and privacy it offered, with more than an acre of land included in the sale. "When we arrive home, we go through the big military gates on the site and drive past all the derelict buildings," Sean said. "There's no street lighting, no public access, no neighbours – we're driving through history just to reach our home. When the site finally gets developed, the tower is very likely going to be the only bit which remains." Mary went on: "It's been part of the landscape for the locals since the 40s, it would have been a shame for that to have disappeared. "We're custodians to the water tower, I don't feel like we own it really and, one day, it will be passed onto someone else in the future when we've finished enjoying it." With strong connections to the site, Mary's father worked as a civilian electrician at the hospital and her significant other, Sean, was a patient there at the tender age of seven. Sean said they realised "it would be a fantastic build" if they decided to convert the tower, leading to their efforts to transform the 15m-tall structure into a seven-bedroom, four-bathroom residence. While the main living spaces including the kitchen, lounge, office, gym, utility room, and a toilet are nestled in a modern glass extension, the bedrooms and bathrooms find their place within the tower itself. Mary explained the creation of the glass addition saying: "It was the only way we could get planning permission so it was a little more costly with the glass and the timber frame, but at the end of it we're going to have a seven-bedroom property,". The renovation journey saw Mary and Sean living in a caravan on-site during a brief stint while the water tower was being transformed. They also had to install their own utilities in the once uninhabited space, such as sewage treatment, filtration for drinking water and a heating tank. The tower itself is "not a huge space" width-wise, Mary said, but thanks to its height it has the potential for five floors, with two currently functioning as bedrooms and a bathroom, leaving three left to complete. "We're experiencing now what it's like to sleep in the tower," Mary revealed. "It's the perfect place for a restful sleep, it's absolutely brilliant, and it's a miracle we've been able to do this." To complete the renovation fully, the couple need to finish the tower's conversion, fit a sprinkler system, and round off any plastering, painting and decorating. After Sean was diagnosed with MND in March 2023 during the renovations, they are keen to finish the conversion by summer's end for him to "enjoy" their efforts before his condition deteriorates. Sean shared his experience with an experimental treatment drug called Tofersen, which he credits with helping manage his symptoms, such as weakness and muscle reduction, for around a year. Facing unexpected costs that stretched their budget, the couple set up a GoFundMe page, estimating the total spend on the conversion at about £500,000. "We're really grateful to everyone who has donated," expressed Mary, acknowledging the support they received. "You don't set up a GoFundMe page without a lot of thought and we're just trying to relieve some of the stress on us. Once you start a project like this, you've got to finish it – you can't afford to not finish it because then you've got nothing."
Wales Online
3 days ago
- Wales Online
Couple trying to convert RAF water tower to 7-bedroom house go £150k over budget and appeal for donations
A couple who have spent more than four years converting a Second World War water tower into a seven-bedroom home want to 'enjoy' their efforts before the husband's motor neurone disease (MND) symptoms worsen. Mary and Sean Davies, 57 and 55 respectively, currently live on more than an acre of land at the RAF Hospital Nocton Hall site in Lincolnshire – a now disused military hospital which once served to treat injured soldiers – after the couple purchased the 1940s water tower and its accompanying holding tank for £25,000 in 2018. Married for 31 years, Sean, a tree and landscape officer for Newark and Sherwood District Council, and Mary, who works as a milker at a local dairy farm, started the hefty renovation job in 2021, armed with a £350,000 budget and dreams to turn it into a seven-bedroom, four-bath home. The couple, who have five children and five grandchildren, faced hiccups along the way, such as staying in a caravan for a short period while the site was unlivable and ensuring their own utilities, including sewage treatment and drinking water, were properly installed on the once uninhabited space. After unexpected renovation costs took them over budget, the pair launched a GoFundMe page for support to complete the build as they estimate they will spend £500,000 in total – and they 'can't afford' to leave the project unfinished as they would be left with 'nothing'. Thankfully, the couple predict the work will be wrapped up by the end of the summer – with just renovations on the top three floors of the five-level tower left to complete, as well as the installation of a sprinkler system. (Image: PA Media) After Sean was diagnosed with MND during the works in March 2023, which is currently incurable and progressively damages parts of the nervous system, they want to ensure he has time to 'enjoy' their efforts before the condition worsens. 'The sooner it's all finished, the sooner we can enjoy it,' Mary told PA Real Life. 'Sean's diagnosis made us even more determined to get the project completed. 'For him to be able to experience what we have created here in its fullest and reach the top of the tower, he needs to be mobile. 'He's mobile now, but we don't know how long for.' Mary and Sean purchased the water tower at the now disused RAF Hospital Nocton Hall site in 2018 for £25,000. Having previously lived in council properties, the couple were motivated to relocate to the site by the amount of space and privacy they would acquire, with more than an acre of land attached to the sale. 'When we arrive home, we go through the big military gates on the site and drive past all the derelict buildings,' Sean said. 'There's no street lighting, no public access, no neighbours – we're driving through history just to reach our home. 'When the site finally gets developed, the tower is very likely going to be the only bit which remains.' (Image: PA Media) Mary added: 'It's been part of the landscape for the locals since the 40s, it would have been a shame for that to have disappeared. 'We're custodians to the water tower, I don't feel like we own it really and, one day, it will be passed onto someone else in the future when we've finished enjoying it.' The couple also have personal connections to the site when it was up and running, as Mary's father worked as a civilian electrician at the hospital and Sean was a patient there when he was seven years old. With the tower's bricks measuring half a metre thick, Sean said the couple knew 'it would be a fantastic build' if they were to convert it – and they set about turning the 15m-tall structure and its holding tank into a homely seven-bedroom, four-bath property. While the bedrooms and bathrooms are situated in the tower itself, the kitchen, living room, office space, gym, utility room and a toilet are located in a glass, two-storey extension to the structure, created using the existing foundations from the holding tank. 'It was the only way we could get planning permission so it was a little more costly with the glass and the timber frame, but at the end of it we're going to have a seven-bedroom property,' Mary said. During renovations, the couple had to stay in a caravan close to the tower for a very short period while the site was unlivable. They also had to install their own utilities in the once uninhabited space – such as sewage treatment, filtration for drinking water and a heating tank. The tower itself is 'not a huge space' width-wise, Mary said, but it has the potential to contain five floors thanks to its height – two floors of which are now functioning as bedrooms and a bathroom, with just the final three to complete. 'We're experiencing now what it's like to sleep in the tower,' Mary said. 'It's the perfect place for a restful sleep, it's absolutely brilliant, and it's a miracle we've been able to do this.' To fully complete the renovation, the couple need to finish the conversion of the tower, install a sprinkler system and round off any plastering, painting and decorating. After Sean received an MND diagnosis in March 2023 throughout the renovations, the couple are hoping to complete the conversion by the end of the summer to allow him to 'enjoy' their hard work before the condition worsens. Thankfully, Sean said he is receiving an experimental treatment drug named Tofersen, which he has been taking for around a year and which he feels has helped manage his symptoms – such as weakness and muscle reduction. 'It's given us hope for a better future,' Mary said. Show more The pair launched a GoFundMe page to help them complete the conversion after unexpected costs left them over budget – estimating they will spend £500,000 in total. 'We're really grateful to everyone who has donated,' Mary said. Show more 'You don't set up a GoFundMe page without a lot of thought and we're just trying to relieve some of the stress on us. 'Once you start a project like this, you've got to finish it – you can't afford to not finish it because then you've got nothing.' To find out more, visit Mary and Sean's GoFundMe page here:
