Devastated Dublin mum fights for life-changing medicine to be approved for son
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
A desperate mother has encouraged the State to quickly approve and fund life-changing medicine for her eight-year-old son who suffers from a life-changing and life-limiting rare form of muscular dystrophy.
Archie Ennis, 8, from Tallaght, suffers from Duchenne muscular dystrophy and is in desperate need of medication to help his condition. His mother, Una Ennis, said that "time is muscle" and children like Archie could face dying in their 20s if medicine is not approved quickly.
Archie was diagnosed with Duchenne muscular dystrophy in December 2024. The condition affects around 120 children in Ireland.
Mrs Ennis described Archie as a "little character" who loves to play with his friends and "be with all the boys". He is aware his muscles get tired but he is a "determined" boy, who is now on steroids.
(Image: Una Ennis)
Mrs Ennis explained: "Archie was diagnosed with Duchenne muscular dystrophy two weeks before Christmas. We had a feeling something was going on with Archie. We actually thought at the start that it was just dyspraxia.
"I just thought he needed physio, but the physio wasn't helping, and she said, 'We'll go to the doctor'. [The doctor] said that Archie has Duchenne muscular dystrophy. It's a progressive muscle weakening condition which will cause his legs to become weaker and then his arms.
"She said that most boys who would have Duchenne would end up in a wheelchair. To hear that and to see our perfect little boy, our whole world was just turned upside down in an instant."
She went on to say that Archie's lungs will become weaker and his heart will become weaker. "Most boys in their early 20s can die from cardio myopathy, which causes the muscles in the heart to become a lot weaker," she said.
(Image: Una Ennis)
"As parents, you're just devastated and desperate to try and get him some help. They say it's a rare condition, but it's the most aggressive muscular dystrophy.
"You hear all these stories of young boys passing away because they don't get medicine." In April, the European Medicines Agency (EMA) recommended granting conditional marketing authorisation to the drug Duvyzat, also known as Givinostat, as a treatment for Duchenne muscular dystrophy.
Last week, the European Commission granted conditional market authorisation for the product. However, Mrs Ennis now fears that it could take several years for Ireland and the National Centre for Pharmacoeconomics (NCPE) to approve its use on the Irish market.
She will hold a demonstration outside Leinster House on Wednesday afternoon before presenting to politicians in the AV Room from 2.30pm where she will tell them how urgent the medicine is. Mrs Ennis continued: "Every day that Archie doesn't have medicine, his muscles are dying.
"If it's a year or two down the line [that the medicine is approved], I can't reverse that. I need the medicine as quick as possible, because time is muscle for Archie and all the boys with Duchenne."
In addition to Givinostat, Archie will require gene therapy. A doctor in Los Angeles has said that they can give him this treatment.
However, his parents have to fundraise €3.5m in order for him to travel to the US. Some €3.2m is required for the medicine, while the extra money is needed for the family to stay there for 12 weeks for the infusion. To date, over €800,000 has been raised.
In the meantime, Mrs Ennis is begging the Government and the NCPE to approve Givinostat to help Archie. She is also urging Health Minister Jennifer Carroll MacNeill to attend the briefing in Leinster House on Wednesday.
Fianna Fail Senator Teresa Costello has also urged the Minister to meet the affected parents. The Tallaght-based senator said she emailed the Givinostat manufacturer last week as soon as progress was made with the European approval, asking them to expedite the time the medicine would be available to Irish children.
She added: "I will be watching the progress of this like a hawk because we just don't have two years to wait for this to be approved. Parents are in a really dire situation where every month there is a deterioration with their children."
Join our Dublin Live breaking news service on WhatsApp. Click this link to receive your daily dose of Dublin Live content. 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. If you're curious, you can read our Privacy Notice.
For all the latest news from Dublin and surrounding areas visit our homepage.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Agriland
14 hours ago
- Agriland
Met Éireann issues nationwide advisory for potato blight
Met Éireann has issued a Status Yellow advisory for potato blight over the coming days across the country. The national forecaster said that conditions conductive to the spread of blight will develop nationwide on Thursday and Friday (June 12-13). Met Éireann advised growers that there will be opportunities for spraying today (Wednesday, June 11). Blight Potato blight, caused by the pathogen Phytophthora infestans, poses a significant threat to potato crops in Ireland and globally. Despite recent advances in fungicides, improved varieties and better disease forecasting, Teagasc said that there is still no means of eradicating an outbreak in a crop. Therefore, disease prevention is key. Weather conditions which favour the spread of the disease occur when temperatures rise above 10°C and relative humidity rises above 95%. The typical mild, damp Irish summer can provide the ideal conditions for the spread of the disease. Teagasc has estimated that some €5 million is spent annually on fungicides in Ireland to mitigate against the disease. Met Éireann Met Éireann has said that during the coming week there will be unsettled weather across the country, with rain and showers at times. Some of the showers will be heavy and with a likelihood of thunderstorms developing, particularly in the next few days. Rainfall amounts are expected to be close to or above average in most areas, and one and a half to twice the average in parts of the east, midlands and north. Mean temperatures are expected to be close to average in the south and west, and a degree above normal values in the east and north of the country. Soil temperatures are expected to rise a little over the coming seven days. Soil moisture deficits are generally between 0mm and +45mm with the driest soils in the south. However, Met Éireann noted that most soils in the north midlands are very close to saturation. Soil moisture deficits will continue to decrease in the coming week.
Agriland
14 hours ago
- Agriland
Irish MEP claims Brazil underreports antibiotic use in livestock
An Irish MEP has claimed that Brazil underreports the level of use of antibiotics in its livestock and food production sector. Ciaran Mullooly said he has raised the issue with the European Commission, saying that underreporting antibiotic use 'raises major public health concerns in light of growing threats' of antimicrobial resistance (AMR). His statements come as the EU and the South American trading bloc Mercosur – of which Brazil is a member – inch closer to ratifying a trade agreement that would allow an additional 99,000t of South American beef, as well as various amounts of other food products, enter the EU at reduced tariffs. The use of antibiotics in food production has long been identified as a key factor in the emergence of AMR, which can lead to resistant infections in humans. According to the World Health Organisation (WHO), AMR is linked to 1.27 million human deaths per year around the world. The EU has taken steps to reduce antibiotic use in its own food production sector. However, according to Mullooly, concern remains over antibiotic use in other food producing regions. The Ireland Midlands–North-West MEP claimed that, while the EU, US, Canada and Australia provide regulatory data on the amount of antibiotics used in their food producing sectors, Brazil has 'consistently failed to provide adequate data'. Mullooly further claimed that the 'only interpretation' to explain this alleged lack of data is that 'the use of antibiotics is widespread and there are inadequate controls'. The Independent Ireland MEP said that testing food products that enter the EU 'only covers one day of the animal's production cycle'. 'Europe's progress in reducing antibiotic use in food production is clear evidence of our commitment to protecting public health. However, the lack of reliable data and transparency in other regions, including Brazil, poses a significant threat not only to consumers in those countries but also through imports of food products,' Mullooly said. He called on the European Commission to press for greater transparency and rigorous reporting standards from countries exporting to the EU. He said: 'The battle against AMR is global. We cannot allow weak reporting and inadequate reporting standards from countries exporting to the EU. 'It is yet another clear example that the EU-Mercosur Trade Agreement, which includes significant tariff-free beef, poultry and pork exports to the EU, must not be ratified. No economic arguments can justify compromising the human health of EU citizens,' Mullooly added.
Agriland
14 hours ago
- Agriland
Report shows environmental dimension of antimicrobial resistance
The Minister of State at the Department of Agriculture, Food and the Marine (DAFM) with responsibility for research and development, Noel Grealish has today (June 11) launched a report entitled 'Ireland's First Gap Analysis Report on Research needs in Relation to Antimicrobial Resistance'. Minister of State Grealish launched the report alongside the Minister of State at the Department of Health with responsibility for public health, wellbeing and the National Drugs Strategy, Jennifer Murnane O'Connor. The report by researchers from Maynooth University provides a comprehensive review of previous and ongoing research in antimicrobial resistance (AMR) across human and animal health in the Republic of Ireland from 2017 to 2023. It also provides an update on research in relation to the environmental dimension of AMR in an Irish context from April 2021 to December 2023. According to DAFM, antimicrobial resistance or AMR is a global threat and an urgent challenge. It poses a significant risk to human health and requires a collaborative multidisciplinary approach to promote actions across the human, animal and environmental sectors to achieve the best health outcomes for all three sectors. Report Ireland has adopted a cross departmental 'One Health' approach to AMR, led by the Department of Health and DAFM. The report shows that Irish researchers have been to the global forefront of ongoing research on AMR. However, Irish research requires considerable expansion in research areas for novel diagnostics/therapeutics and vaccines. The report also indicates that Irish research needs to focus on providing solutions or alternatives to the identified AMR problems to minimise the impact of AMR to human, animal, and environmental health. Minister of State Grealish said: 'This timely report highlights the need for more research that examines One Health in its entirety, in relation to the complexity of the intersectoral interactions and how these interactions contribute to AMR. 'In a world of increasing uncertainty, complexity and change, a One Health approach is crucial to safeguard the interests of society as a whole,' the minister added.
