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Edinburgh Live
05-07-2025
- Health
- Edinburgh Live
Dad of Scottish boy with terminal illness forced to sell family home amid call for help
Our community members are treated to special offers, promotions and adverts from us and our partners. You can check out at any time. More info The parents of a Scottish boy with a rare condition have sold their home while shelling out thousands of pounds on his treatment. Six-year-old Jamie Tierney suffers from rare muscle wasting disease Duchenne muscular dystrophy (DMD). His dad, also Jamie, has called on more support to help families with terminally ill children. The 33-year-old said making his family homeless was the best options amid the difficult circumstances they find themselves in. The family can put money from the sale towards treatment for Jamie. However, dad Jamie believes there should be a body set up to support families navigate the difficulties a terminal diagnosis brings - from accessing benefits, to help with housing. Jamie, 33, from Dunfermline, says the family home became unsuitable for his son as they are now staying with different family members while they wait to hear if they will be given a council house, reports the Record. They receive support from the Muscular Dystrophy UK charity, and the NHS, as well as carers' allowance, but have to deal with each organisation individually, and Jamie believes a streamlined service would make it easier for families. Jamie's call for change comes after the family were denied the chance for Jamie junior to get a wonder medication which is provided free to the NHS. The family has headed abroad on a number of occasions for Jamie to receive treatment. Givinostat, a groundbreaking new life-extending treatment which slows the progress of the condition, has been cleared for use in the UK and is being used in England. But Scottish health boards have not given the drug to any patients through an early access programme, despite patients south of the border benefitting from it. Jamie said: "We sold our family home for many reasons - it was a townhouse with too many stairs, completely unsuitable for Jamie. We needed to find a way to give him independence. "Jamie's needs are increasing year by year. Our street is on a hill, and watching the kids play there breaks my heart - knowing Jamie can't join in this summer. "We need to keep money for future treatments and medical needs for Jamie. I think there should be supportive pathways for families who are in this situation and to aid them with options and help as currently we are jumping through hoops. "We were told we were the last family accepted on a clinical trial in the U.S. We were petrified but ready to move for Jamie. It fell through - we were devastated." Jamie's complex condition gradually weakens all the muscles in the body and affects one in 5,000 boys. It also has a life expectancy of around mid-20s. The family have travelled to both the US and Mexico in the search for potential treatment options as they have fundraised tirelessly through raffles and help from family and friends. Jamie added: "As of this Friday, we're technically homeless. We can't buy again. My wife had to give up work to care for Jamie, and I'm in the early stages of building a new business that just about keeps us afloat. Join Edinburgh Live's Whatsapp Community here and get the latest news sent straight to your messages. "Housing are trying to help, but we're told we just meet the criteria of 'homeless'. Yes, we could rent privately but a suitable ground-floor property would cost double our old mortgage. "The system isn't built for families in extreme, complex situations and when you don't fit the system the system forgets you. How are families supposed to survive like this? I think there's certainly got to be some sort of help. "If we weren't in this situation my wife and I would both be working. She is no longer working and the stress and worry on your child's health affects your work. I'm in a first year start up struggling to support us. "If we had to go private rent it would financially cripple us. We are self funding Jamie's treatments with fundraising but fundraising has become harder and harder for us. We just feel sorry for other families in this situation. "There's families that are being affected every day. I wouldn't wish this on anyone. We would live on the streets for Jamie to be healthy, but the system doesn't seem to consider us." You can donate to their GoFundMe page here. The Scottish Government said: "We have every sympathy with the Tierney family and the hardships they're facing. We want disabled people and carers to get the support they are entitled to, making sure the application process is as straightforward as it can be. "Child Disability Payment is designed to mitigate some of the additional costs of caring for a disabled child or young person and we have a fast-track application route for people who have a terminal condition. "We have also transformed financial support for unpaid carers in Scotland, in recognition of the impact caring can have on a family's finances. "Local authorities will be provided with £15 billion this financial year for a range of services, including housing options services - an advice process councils use when someone approaches them with a housing problem."
Daily Record
04-07-2025
- Health
- Daily Record
Dad of tragic Scots boy in government help call after selling home amid treatment nightmare
Jamie Tierney, whose son is terminally ill, has sold the family home. The dad of a tragic Scots boy has called for more help for families with terminally ill children - after selling their home while shelling out thousands of pounds on his treatment. Devoted dad Jamie Tierney believes there should be a body set up to help families navigate the difficulties a terminal diagnosis brings, from accessing benefits to help with housing and other issues. The 33-year-old, of Dunfermline, Fife, said he was forced to make his family homeless as it was the best option due to the difficult circumstances they find themselves in. They can put money from the sale of their home towards treatment for their six-year-old son, also Jamie, who suffers from rare muscle wasting disease Duchenne muscular dystrophy (DMD). Jamie senior said the youngster's condition meant the family home had become unsuitable for him, and they are now staying with different family members as they wait to hear if they will be given a council house. They receive support from the Muscular Dystrophy UK charity, and the NHS, as well as carers' allowance, but have to deal with each organisation individually, and Jamie believes a streamlined service would make it easier for families. Jamie's call for change comes after the family were denied the chance for Jamie junior to get a wonder medication which is provided free to the NHS. The family has headed abroad on a number of occasions for Jamie to receive treatment. Givinostat, a groundbreaking new life-extending treatment which slows the progress of the condition, has been cleared for use in the UK and is being used in England. Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. But Scottish health boards have not given the drug to any patients through an early access programme, despite patients south of the border benefitting from it. Jamie, 33, said: "We sold our family home for many reasons — it was a townhouse with too many stairs, completely unsuitable for Jamie. We needed to find a way to give him independence. " Jamie's needs are increasing year by year. Our street is on a hill, and watching the kids play there breaks my heart — knowing Jamie can't join in this summer. "We need to keep money for future treatments and medical needs for Jamie. I think there should be supportive pathways for families who are in this situation and to aid them with options and help as currently we are jumping through hoops. "We were told we were the last family accepted on a clinical trial in the U.S. We were petrified but ready to move for Jamie. It fell through — we were devastated." The family have headed to the United States and Mexico for treatments for Jamie, paid for with the help of fundraising from raffles and GoFundMe pages. The incurable muscle-wasting disease, which gradually weakens all muscles in the body, affects one in 5,000 boys and sees sufferers having a life expectancy of around mid-20s. Jamie added: "As of this Friday, we're technically homeless. We can't buy again — my wife had to give up work to care for Jamie, and I'm in the early stages of building a new business that just about keeps us afloat. "Housing are trying to help, but we're told we just meet the criteria of 'homeless'. Yes, we could rent privately — but a suitable ground-floor property would cost double our old mortgage. "The system isn't built for families in extreme, complex situations and when you don't fit the system the system forgets you. How are families supposed to survive like this? I think there's certainly got to be some sort of help. "If we weren't in this situation my wife and I would both be working. She is no longer working and the stress and worry on your child's health affects your work. I'm in a first year start up struggling to support us. "If we had to go private rent it would financially cripple us. We are self funding Jamie's treatments with fundraising but fundraising has become harder and harder for us. We just feel sorry for other families in this situation. "There's families that are being affected every day. I wouldn't wish this on anyone. We would live on the streets for Jamie to be healthy, but the system doesn't seem to consider us." You can donate to their GoFundMe page here. The Scottish Government said: "We have every sympathy with the Tierney family and the hardships they're facing. We want disabled people and carers to get the support they are entitled to, making sure the application process is as straightforward as it can be. " Child Disability Payment is designed to mitigate some of the additional costs of caring for a disabled child or young person and we have a fast-track application route for people who have a terminal condition. "We have also transformed financial support for unpaid carers in Scotland, in recognition of the impact caring can have on a family's finances. "Local authorities will be provided with £15 billion this financial year for a range of services, including housing options services – an advice process councils use when someone approaches them with a housing problem."
Irish Examiner
30-06-2025
- Health
- Irish Examiner
Couple push for drug that slows down muscular dystrophy to be made available in Ireland
The mother of an eight-year-old boy who suffers from muscular dystrophy has met with TDs to push for a new potentially lifesaving drug to be made available in Ireland. Dubliners Una Ennis and her husband Kenneth ran a high-profile campaign for their son Archie who was recently diagnosed with a muscle wasting disease that affects around 120 boys in Ireland. The family has raised more than €1m to help secure specialist gene therapy treatment for Archie, which will cost €3.5million in the US. In the meantime, Una Ennis is calling on the government to pay for a drug that is being rolled out in parts of Britain which will help slow down the disease that is attacking her son's body. 'I met with a number of TDs in Leinster House after we held a peaceful demonstration outside and we wanted to show a presence for these children," said Mrs Ennis. 'We are trying for Archie and for all the children to get this drug brought into Ireland to help them. To get the diagnosis but have no medicine is heartbreaking, we need to have hope. 'The drug Givinostat has been brought into parts of Britain. We want that too, but we need the government to pay for it. 'We are still waiting on the pharmaceutical companies to put their application into the government to cover the costs or sign off on it. "Either way there is no answer yet, but we have had a lot of support from lots of TDs including Sean Crowe and Senator Teresa Costello and progress is being made." Givinostat is a drug used to treat muscular dystrophy in children while they can still walk. It works by slowing down the muscle deterioration by turning genes on and off within cells particularly in the muscle tissue. The disease itself is a genetic disorder that weakens muscles and there is no cure. Una and Kenneth Ennis are now hoping to meet with the minister for health Jennifer Carroll MacNeill to discuss their son's situation. 'She has responded to us and is willing to meet with us, but we need the drug to be paid for as soon as possible. Time is muscle, that is the most important thing," said Una. 'Every day counts, we need this early access, there is an alternative in America but the treatment there is €3.5million. 'If we could just get that drug over the line, that would give all our children a start. But we need medicine now. I can't watch my son get weaker. I think anyone with a child affected by this will know how we feel. They all deserve it. 'Time is muscle and all we can offer children here is a wheelchair, and physiotherapy which takes six months as well as some steroids. 'In the UK it is the next level, the standard of care there is unreal. We should have the same treatment here and not have to travel to the UK for it.'
Daily Mirror
17-06-2025
- Health
- Daily Mirror
'My son, 12, can't have free life-changing drug because of where we live'
No mother should have to watch their child suffer, but one woman shares what it's like witnessing her 12-year-old boy slowly deteriorate because he's not eligible for a new drug that could improve his life Having to watch her son slowly fade away is heartbreaking in itself but knowing he can't have a free drug because of where he lives, is nothing less than mental torture. That's the everyday reality for Colleen who is mum to Alfie Pentony, 12, from Newry, County Down, who was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was just four years old. Her fun-loving, football -mad son is getting weaker every day - but a new drug, Givinostat, could slow down his incurable condition and help him walk for another three years. But although the drug is free in other parts of the UK, the Belfast Trust has said it does 'not have the capacity' to offer it in Northern Ireland. 'We're heartbroken and devastated,' Colleen, 43, tells The Mirror. 'It's unjust, shameful and feels like mental torture knowing there's a drug that could help him but he can't have it because of where we live. "Alfie is a typical little boy who wants to grow up and play for Newcastle United like Lewis Miley. We know this is never going to happen but if he got this drug, it would at least help prolong his ability to walk for maybe another three years and continue to kick a ball for longer.' Muscular Dystrophy is an inherited genetic condition that gradually causes the muscles to weaken so sufferers eventually lose the ability to walk - with most only living to their 20s or 30s. While DMD is one of the most common and severe forms - this new drug could slow it down giving patients an extra three years without being restricted to a wheelchair. 'We don't know how long Alfie has left on his feet, most boys are wheelchair bound at the age of 12, so he is beating the odds so far,' Colleen adds. 'His muscles are breaking down every day - but time is muscle and in a few months it could be too late for him. "Every day that he doesn't have access to the drug, he is getting weaker than the boys who have access to the drug which is unjust and cruel. The Trust has put a price tag on my son's life and I'm not having it, I don't know how they can sleep at night. 'This drug is something that could dramatically change the course of our son's disease and to be told we can't have it is mental torture. I feel let down by the service that is meant to protect these boys, the fact that we are the only part of the UK that won't provide this drug is shameful. It could massively prolong Alfie's life and his quality of life.' Alfie is also pleading for the drug - not just for himself - but for the 10 other boys in Northern Ireland who it could also help. The anti-inflammatory drug, Givinostat, has been approved for use in the UK by the medicines regulator and is available on the NHS for people who meet strict criteria. But individual trusts must apply to take part in the Early Access Programme (EAP). The Belfast Trust said currently it 'is not in a position to proceed' to offer the free drug. 'Its implementation will need to be managed within defined and agreed protocols and additional staffing resources will also be required to ensure the treatment can be provided safely," a spokesperson added. "We recognise this will be very disappointing for families and the Belfast Trust sincerely apologises to them.'
Scottish Sun
13-06-2025
- Health
- Scottish Sun
Our brave Jasper is slowly losing the ability to walk – a drug could change that but the NHS cruelly won't fund it
Find out everything you need to know about Jasper's condition below LIVING NIGHTMARE Our brave Jasper is slowly losing the ability to walk – a drug could change that but the NHS cruelly won't fund it Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) THE family of a 10-year-old boy who's losing the ability to walk have described the 'nightmare' battle they face with the NHS to access a free drug for help. Rosie and Pete Day from Horsham, West Sussex have been fighting for the drug givinostat for their son Jasper who has Duchenne muscular dystrophy (DMD). Sign up for Scottish Sun newsletter Sign up 4 Jasper and his twin sister both have Duchenne muscular dystrophy - but Arabella is a carrier while Jasper is most affected Credit: PA 4 The Day family are fighting for Jasper to get givinostat, which can slow progression of the condition Credit: PA Duchenne is a genetic muscle wasting condition that causes progressive muscle weakness. In the UK, an estimated 2,500 people are living with the condition The Day family have twins Jasper and Arabella, and two older daughters. Both Jasper and his twin sister Arabella have Duchenne, with Arabella a carrier and Jasper the most affected - as the condition mostly affects boys. Read more on muscle conditions BEHIND BARS Woman left battling fatal 'muscle death' triggered by first ever spin class Givinostat, developed by ITF Pharma UK, can slow progress of Duchenne - keeping children on their feet for longer - and is being offered for free by a drug firm while it goes through the process of NHS approval. Only some NHS trusts across the UK, and few in England, are giving out the drug despite it being part of an early access programme since November. Families are now facing a "cruel" postcode lottery over who gets the medicine and are in a race against time, according to the charity Duchenne UK. Some NHS trusts are refusing to supply the drug while others delay it by drawing up lists of who they think should get it first. NHS trusts say they need to pay for monitoring the drug - around £1,900 per year per patient - out of their own budget. Rosie said: "We try and live in the moment and, in this moment, there's an opportunity to make a massive change to Jasper. Toddler, 3, left fighting for life after 'going off his food' - as killer cocktail of common viruses attacked his heart "We're not going to cure it, but this drug gives him the best chance of having the early life that he wants to have and what every parent wants to give their child. "It's so close - and yet we're stuck. "We're stuck in this process where there's something in reaching distance that could make a huge difference to keep him walking, keep him active, keep him with his siblings in the garden, keep him walking up the stairs, all of those things, and it just feels that we can't quite get there. "We're on the finishing line to get something that will make a difference and we can't quite get there because of the system we're in. "The drug is not going to cure it, but it will give him the childhood you would wish to give your child - to keep them playing football, coming on dog walks, being able to walk up the stairs, playing the French horn, all of those things that you dream your child is going to get to do.' She added: "It feels like a nightmare, because you know that the doctors want to give it, but when it comes to getting the drug in his mouth and seeing what it would do, we're stuck. "It's a lottery, basically, depending on where you are in the country ... and within NHS trusts themselves." 'When will I get the drug, mummy?' Jasper is under the care of the Evelina London Children's Hospital, which is only now starting to contact patients and is drawing up a priority list for who gets the drug first. "Every day that passes by is a day that we can see Jasper decline and see him struggling with his muscles," Mrs Day said. "Two weeks ago, he asked me, 'When will I get the drug, mummy?' "We're stuck in a situation over who's going to make those decisions regarding who gets the drug - of whether Jasper gets it or another boy. "For every boy it's heartbreaking, because someone ultimately is not going to get the drug at that moment based on the current criteria." She continued: "If Jasper stops walking, we're not going to get that back. We're stuck in a situation over who's going to make those decisions regarding who gets the drug - of whether Jasper gets it or another boy Rosie Day "Every day matters. Six months ago, Jasper could walk up and down the stairs easily. He can't do that now and Pete has to push him up the stairs every night. "Yet we can't give him something that is as simple as two spoons full of medicine and a blood test, and a little bit of maybe resource looking at the blood test results - that is what is standing in our way." Rosie said it was unclear how the Evelina is "going to make a fair choice" because knowing who will lose mobility is not an exact science. And she said the process is "hugely subjective" because there is no linear decline in the condition and the decisions made by NHS trusts could end up being "completely wrong". According to Duchene UK, boys whose condition is getting worse risk falling off the list entirely while waiting for the drug. Around 500 boys in the UK are eligible for givinostat, which can be taken at home like Calpol, with hospitals then doing follow-up blood tests of around eight in the first year, followed by twice a year thereafter. 4 Jasper is under the care of the Evelina London Children's Hospital, but it's unclear whether they'll give him the drug Credit: PA 4 The family say the NHS needs to urgently make the drug available to both ambulant (walking) and non-ambulant boys Credit: PA Children may also need an ECG, though these are already part of routine Duchenne monitoring. Emily Reuben and Alex Johnson, founders of Duchenne UK, said: "As time ticks by, more boys are losing out on their chance to access givinostat. "This is a simple treatment, which can be easily managed at home, and requires uncomplicated blood tests to monitor. It's free to the NHS and could offer real hope for patients and their families. "The delays are cruel and the postcode lottery is unjustifiable. We are calling on the NHS to urgently make this available to both ambulant (walking) and non-ambulant boys." To date, all health boards in Scotland are rolling out the drug, alongside those in Swansea and Cardiff. Leicester Royal Infirmary was the first trust in England to give the drug, but the Evelina has not yet, and neither have trusts in Manchester, Liverpool and Newcastle. Great Ormond Street Hospital is working to supply the drug. A spokesman for the Evelina said: "We have begun contacting families of all existing Evelina London patients who may be eligible for givinostat and are working to set up appointments in the next few months. "Our clinical team are working through our patient lists and are currently prioritising children who need the treatment most urgently, or are at a higher risk of losing movement (ambulation) soon." An NHS spokesman said: "The first National Institute for Health and Care Excellence (Nice) committee meeting to consider this treatment is scheduled to be held in July 2025, and if manufacturer ITF Pharma can offer a cost-effective price to enable Nice to recommend its use, the NHS will be ready to work with the company to explore fast-tracking access for patients. "NHS England has published guidance on manufacturer-led early access schemes, which require trusts to cover substantial costs and find additional clinical resources to administer new treatments, and we understand a number of trusts across the country are preparing to offer givinostat via such a scheme." Parents have met with Health Secretary Wes Streeting to try and speed up access.
