Protest For Duchenne Muscular Dystrophy Funding
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Sunday World
12 hours ago
- Sunday World
Mum makes desperate plea to aid young son's battle with rare muscle-wasting disease
'I hope that this €38k-a-month medicine – if we can get it – will give Archie hope' But determined Una Ennis is vowing to continue fighting to raise more money until she reaches the target of €3.2m, which would would allow her son Archie (8) get on to a ground-breaking gene therapy programme. Una also today pleads with the government to allow the rollout of a special medicine called Givinostat, which would help Archie and around 110 other boys in Ireland with Duchenne Muscular Dystrophy slow down the worsening of the disease. Brave Archie and his mum She confirms the cost of the drug is horrendously expensive, at €38,000 a bottle per month, but stressed every child's life is priceless. The healthcare worker from Jobstown in Tallaght, Dublin, along with other parents of Duchenne boys recently protested outside the Dáil about their plight, and met with health minister Jennifer Carroll MacNeill. 'It's absolutely devastating to have this diagnosis for your child and not having access to medicine to treat it. All we want to do is save our little boy,' Una (32) tells the Sunday World . 'If a child in Ireland has cancer, they are given chemo. If a child in Ireland has Duchenne, they're given a wheelchair and a steroid — and it's just not acceptable. How do I explain this to my little boy? Read more 'I hope this medication, if we get it, can give him some hope. 'Givinostat will slow down the progression of the disease. It will keep the boys on their feet for longer. It will give them a longer life expectancy and slow everything down.' Una and her husband Kenneth (33), who is a sergeant in the army, were given the devastating news about their son's diagnosis late last year. 'For years we thought 'what's going on?' and thought he was just being a little boy and taking his time. 'But when he was struggling to get up the stairs and things started to regress we thought 'something's really wrong here'. Then we got the test results, it was just a nightmare,' she recalls. Eight-year-old Archie Ennis The couple, who also have a four-year-old girl, Maisie, were told the devastating effects of the disease, which affects one in 5,000 boys. One in five million girls get the disease, but the symptoms are different and there are no documented Irish sufferers. 'This is a rare genetic condition that will weaken Archie's muscles,' she explains. 'It will start to weaken Archie's muscles in his hips and then in his shoulders. The doctor said that it will progress over time to weaken his heart and his lungs. 'She also told us most boys with this condition will end up in a wheelchair at the age of 10.' Life expectancy is generally in the early 30s. 'Archie is currently struggling with his splints that he wears at night time. There is a place in America I'd like to bring him, to see if we can get something to suit him,' she notes. Since news broke of the family's turmoil there has been huge fundraising activities, especially in the Tallaght area and with Alan's army colleagues. Eight-year-old Archie Ennis is fighting Duchenne Muscular Dystrophy News in 90 Seconds - August 12th 'The GoFundMe people would donate online but a lot of people have been giving cash, a lot of people have been giving through Revolut, so whenever they give me that money I put into the Archie trust, which will be fully completed next week,' she explains. 'As of now the gene therapy that we originally wanted to go for [in America], there's a lot of symptoms with it, and three little boys have passed away from receiving this gene therapy, which I am obviously very nervous [about] and don't want to give him that one. 'But as time has been going on there's been another gene therapy that's been rolled out and the data on that is meant to be amazing. 'When that is passed, can you imagine the price of that one which is meant to be better than the original one? It's not ready yet but we're going to keep continuing to fundraise until it's out, and then we will be able to get that gene therapy for Archie. 'But I've only got two years because as Archie gets older, he's more prone to an infection that's actually in the gene therapy. If I don't get it within two years then Archie won't be eligible to receive the medicine.' That is why they want Givinostat in the meantime, to slow down the progression of the disease. 'If the government help us and give us this drug, the boys would stay on their feet a lot longer and live a lot longer,' she stresses. Una has had to reduced her work hours to keep up Archie's medical appointments. 'If we got €3.2 million we would be one step ahead. We would be ready and waiting for that drug to be passed and we'd be there to get the first dose.' Donations can be made on the GoFundMe page at or by Revolut @unacl6jg
The Journal
2 days ago
- The Journal
Being a Gen Z TD: I've been surprised by how little ministers actually engage in debates
AS THE DÁIL summer recess continues, we have been working through the list of newly elected TDs to learn more about how they are adjusting to life in Leinster House. Yesterday, we heard from Fianna Fáil's Martin Daly , today we catch up with Sinn Féin's TD for Galway East, Louis O'Hara. Like a number of other first-time TDs in this Dáil, O'Hara had two election wins under his belt in 2024. The 27-year-old had his first electoral success in last year's local elections and six months later won a seat in Dáil Éireann, with 14% of the first preference votes in the constituency. Before this, O'Hara unsuccessfully contested the 2019 local elections and the 2020 general election. After finishing up in university, he cut his teeth working as a constituency manager for Sinn Féin MEP Chris MacManus. He speaks to The Journal about getting to grips with the new role and how he still isn't sure what approach he would like to see his party take in the upcoming presidential election. Is life as a TD what you expected? 'It's a very busy role, which was something that I had anticipated. It can be challenging at times to balance the work you are doing in the Dáil and the work in the constituency. 'So I suppose going into it, you don't really know what to expect in terms of how all of that is going to play out. I've been involved in politics for a few years, so I had some idea of what the demands of the role would be,' O'Hara said. Although he joined Sinn Féin at the age of 17, O'Hara said taking part in electoral politics wasn't something that was on his mind at the time, or even later when he was a university student in Galway. 'I was asked to run in the local elections in 2019 and agreed to do it and it all went from there. It wasn't something that I had chosen or anything like that, but once I got into it, I enjoyed it and felt I had something to offer to people, and it's kind of gone from there.' Advertisement Peak and pit What's been the highlight of the job so far? 'Every time you get a good outcome for someone. That's probably one of the best parts of the job, that you are in a position to affect change for people on a bigger level, which is very important, obviously, but also on an individual level as well. 'So every time you get a positive outcome, whether it's an individual constituent case, or getting a piece of local infrastructure progressed, or whatever it may be. That's always the highlight for me.' What's been the lowlight? 'That we haven't had any meaningful change in the State,' O'Hara said. 'We've the same government back in again, Fianna Fáil and Fine Gael. We have a worsening housing crisis and a cost of living crisis now that the government don't seem to be either aware of or willing to do anything about. 'So it's quite disappointing, to say the least, that things don't seem to be changing and that things are actually getting worse, and people are finding it more and more challenging in their day-to-day lives.' He added: 'With the Budget approaching now, you hear the soundings from government about how they don't want to introduce a cost of living package or anything like that. 'It's difficult to be optimistic about how things are going to play out for people who are struggling to get by at the moment, and people who are struggling with the housing crisis.' Any surprises? 'Sometimes when we bring issues forward or have debates in the [Dáil] chamber, the relevant minister will be sitting across from you and you bring forward issues to them, and I've been a bit surprised with how little they actually engage with the issues or the points that we make. 'The minister just reads off a prepared script, and doesn't engage at all with the often very valid points that are suggestions and solutions that are made by TDs. 'I think that the Dáil could be a lot more constructive in many ways, from that point of view.' Young people and politics O'Hara is one of a handful of TDs in the Dáil under the age of 30. Related Reads Being a first-time TD: Will I still be doing this at 80? I don't know but I love it for now. Being a first-time TD: I was told people like me don't go to college. This is a dream come true. Being a first-time TD: 'The hours are mad, if I finish at 9.30pm it feels like a half day' 'I'm a renter at the moment. I'm renting a room in a house. 'I've been renting on and off for a few years, and I've spent time living in the family home as well. So I've seen it from a few different angles. 'It's very difficult for renters when you're paying money every week that sort of disappears into a black hole. It's very difficult to save after that, and have any prospect of home ownership, even for renters who are on good incomes. So I definitely feel like I can relate to people in that position,' O'Hara said. 'I hope that my involvement in politics is a positive thing for young people and makes politics more engaging for young people, because it's something that we desperately need.' What route does he think Sinn Féin should take in the Presidential election? Sinn Féin is currently in the process of deciding whether to join with Labour, the Social Democrats, People Before Profit and the Green Party and back Independent TD Catherine Connolly for president or go their own way and run their own candidate. O'Hara said he isn't sure yet which approach he personally favours. 'To be perfectly honest, I'm quite torn on it. I can see the merits of both sides of the argument. Look it, this is being carefully considered at the moment, and we'll have a decision in due course.' Would he like the candidate to be party leader Mary Lou McDonald? 'I think Mary Lou McDonald would be an absolutely fantastic president. There would be no better person to be the representative of the Irish people. 'At the same time, I also think that she's an absolutely fantastic leader of the party in the Dáil, so I suppose that's one thing that has to be weighed up. But certainly, if she ran for president, I think she would do a fantastic job in the campaign, but more importantly, in the role.' Readers like you are keeping these stories free for everyone... A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article. Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation. Learn More Support The Journal
Sunday World
2 days ago
- Sunday World
Gerry ‘The Monk' Hutch considering return to politics with his own party
Gang boss says he may run for election again The gang boss had previously described how his arrest in Spain last October prompted him to contest a Dáil seat, saying his 'shocking' treatment meant that running for office was 'not just an option, it was a necessity'. Reflecting for the first time on his experience as a candidate in last year's general election, he claims his arrest a month earlier was 'orchestrated' by forces who felt 'threatened' by the possibility of him entering politics. In a chapter he penned for a new book, How Ireland Voted 2024 , he calls for more to be done to engage people from deprived communities in the process of elections. Gerry 'The Monk' Hutch narrowly missed out on a Dáil seat last year He does not rule out running for office again, and says if he does he would set up a political party 'dedicated to championing the working class'. Hutch made world headlines when he narrowly missed out on a seat in Dublin Central in last November's election. He secured more than 3,000 first-preference votes — a tenth of votes on the first count, and ultimately finished fifth in the four-seat constituency. There was intense focus on his candidacy at the count centre in the RDS when it looked at one point that he would take the seat. But he was edged out on the 11th count by Labour's Marie Sherlock. She had been trailing behind, but leapfrogged him following transfers from Fine Gael's Paschal Donohoe. In the aftermath of the campaign, Hutch went about studying the proportional representation single transferable vote system — the complexities of which played out so dramatically during his own 'will-he, won't-he' election count. Gerry 'The Monk' Hutch says he isn't ruling out another run for the Dáil after narrowly missing out on a seat last year News in 90 seconds - 10th August 2025 Unlike others who might be regarded as fringe candidates, Hutch does not try to cast doubt over the integrity of the voting system, and does not claim to be robbed by it. Instead, he went about understanding it. In the weeks that followed he contacted some esteemed political academics, asking them to go through the counting process and transfer patterns that resulted in his defeat. It was during the course of a meeting he had with one academic, in an effort to glean a better understanding of the Dublin Central count, that his participation in How Ireland Voted 2024 came about. Gerry Hutch leaving the Criminal Courts of Justice It is a book compiled by academics which gives an in-depth analysis of the election, voting trends and the significance of the election result. The book is a valuable resource for journalists, politicians and academic classes in the aftermath of elections. Hutch's contribution to it might come as a surprise to many, but his insight was deemed relevant because of his near success, and what it said about the experience of the election for some of the most deprived parts of the country. In it he writes that the single transferable vote system 'favours established parties, which can distribute votes strategically among multiple candidates'. He says: 'This is what happened. I was over 2,000 votes ahead of the next candidate at one stage, and looked likely to take the seat. However, an unusually high transfer between the establishment candidates meant I was overtaken in the last count. This system highlights the challenges faced by independents but also underscores the need for reform.' Far removed from the world of politics, 'The Monk' was named in the High Court as the head of the Hutch organised crime group. He came from a background of poverty and deprivation — this and the lack of alternatives is something he always blamed for his own role in criminality. He left school early, but his contribution to an academic book shows he is intelligent as he reflects on the political system. He describes how he had already been considering running for election last October — something 'sparked by the call of my community'. He had 'confided in a few close friends' he says, but 'what followed was nothing short of shocking and surreal'. When he went to his home in Lanzarote in Spain, Hutch was one of nine people arrested as part of a money laundering investigation between Spanish and Irish police. He was released some days later on bail of €100,000. The Regency Hotel attack led to a surge in gangland murders 'I was bewildered with the situation. I knew I had committed no crime,' he writes. 'This led me to question who was orchestrating this and why they seemed so threatened. It was that moment I resolved that running for office was not just an option, it was a necessity.' On returning home, he announced his candidacy to a huge media gathering in Dublin Airport. 'Upon returning to Ireland, the reception I received at Dublin Airport was astonishing,' he says. 'The intense media attention and public interest felt unreal, as though I were an international celebrity. 'The buzz surrounding my potential candidacy even drew comments from political leaders. Some openly criticised the attention I was receiving, with statements suggesting that someone like me should not be allowed to run for election. Others implied that my campaign posed a threat to the established order. These reactions only deepened my resolve. What were they so afraid of?' He reflects a lot about what he observes and a detachment of working-class communities in deprived areas from politics. 'One critical insight I gained is that many working-class individuals underestimate the power of their vote,' he says. 'Political parties benefit from this lack of awareness, as it maintains the status quo.' This is something he says has to change through both education, and changing the requirements for citizens to register to vote. 'During my campaign, I spoke with many people who were unaware they needed to register to vote. I strongly believe that everyone in Ireland should be automatically registered, allowing them to vote upon presenting valid ID at the polling station. Read more 'The current system disproportionately affects working-class communities and those less fortunate, as they must first navigate the registration process before they can even cast their vote.' One outcome of his candidacy is that many people in his constituency registered to vote for the first time, as he set about getting on the electoral register in the first few days of the campaign. But many potential voters, he says, left it too late. 'Many of the households I visited and individuals I spoke with were unaware of the registration requirement and were disappointed to learn they had missed the deadline. This system, in my view, benefits the established political order while doing little to educate non-voters on the importance and impact of participating in elections. He also believes the importance of voting and the electoral process should be taught in schools, 'starting with simple class elections and progressing to student unions'. He says: 'This would instil an understanding of civic responsibility and the power of collective action. Many working-class individuals enter trades or similar professions without realising how their vote can shape policies that directly impact their lives.' When Hutch arrived at the count centre in the RDS on the day of the count, there was a huge media scrum which will go down in history as one of the most bizarre moments of Irish politics. He was questioned doggedly by RTÉ's crime correspondent, Paul Reynolds, over the judgment at the Special Criminal Court which found he had control of three AK-47 assault rifles used in the murder of the Regency Hotel, Dublin, in February 2016. After losing, he jogged out of the count centre and towards Ballsbridge, surrounded by security and with journalists running along side him. The experience is something he is likely to repeat. 'Looking ahead, if I were to run again, I would consider affiliating with or creating a party dedicated to championing the working class,' he says. 'This party would prioritise the needs of those who keep the country running: nurses, carers, tradespeople, and others whose contributions are essential. 'Supporting these individuals with adequate provisions and resources is crucial, as their work underpins our society. History offers lessons — from the sanitation strike in New York in 1968, which led to a state of emergency within a week, to the six-month banking strike in Ireland in 1970, which had minimal impact. These examples demonstrate the indispensable role of essential workers.' He says: 'The north inner city is one of the most deprived areas in the country, but it is surrounded by wealth. The recurring issues were clear: affordable housing, homelessness and crime. 'These were not abstract problems but lived realities for many. The solutions they proposed were practical and actionable. For instance, the Central Statistics Office reported 64,000 vacant homes across Dublin, some deemed unfit for habitation. 'The people suggested investing resources to bring these properties up to standard and involving skilled, motivated individuals from homeless or sheltered accommodations to do the work. 'Their logic was simple yet profound: empower the community to solve its problems, and it will thrive. This spirit of collective effort is what builds strong communities and, ultimately, a resilient nation,' he added. While many would disagree with his candidacy, and take major issue with his attempts to cast himself as a working-class hero, few would disagree with his conclusion that 'the political system was rattled' by his entry into the campaign . 'Throughout this ordeal, I remained steadfast, trusting that the people would see through the noise and recognise the desperation of those clinging to the status quo,' he says. As he makes his voice heard through the most 'establishment' of manuscripts, you get the sense that when it comes to the 'ordeal' of electioneering, the Monk is not done just yet.
