Rare Diseases Dail Éireann — 2026-05-20 ============================================================ Fionntán Ó Súilleabháin (SF), Wicklow-Wexford I once more raise the case of a young Arklow Gaelscoil teacher, Eímear Byrne, with the Minister of State and the Government. As the Minister of State knows, Eímear urgently needs life-saving treatment in the US that costs €600,000. Recently, Eímear received devastating news. Doctors discovered three more aneurysms and she now needs a third open-heart surgery procedure. This one is even more complex and urgent, so time is critical and the family and the community of south Wicklow need and want the Government to intervene to get Eímear to the USA as soon as possible. Life-saving treatment can be done there immediately if the money is available. I plead with the Government again to make an intervention under the exceptional circumstances clause, which does exist. Considering the complexity of Eímear's condition and the risks involved, the surgery needs to be carried out urgently in a specialised clinic such as Johns Hopkins in the US, which has the necessary medical experience and the facilities to treat patients like Eímear. Surgery in this hospital will reduce the rate of mortality during the procedure and reduce potentially life-altering complications such as a second stroke. The operation and rehabilitation in America will give Eímear the best chance of survival so she can live a long, happy and fulfilling life and continue educating the children of Arklow in their native language, as she loves to do. In terms of fund-raising, Eímear states: I have been looking for help with the Government for funding since October 2025 and to no avail. This is why my family have had to look for community support by setting up a GoFundMe page. There is a GoFundMe page for Eímear Byrne in Arklow. Dozens of fund-raising events around the town over recent months have so far raised €230,000 of the required €600,000. People had to dig deep because the Government just was not doing anything. Last Friday, I attended an event in Pearse Park, Arklow. It made the Guinness Book of Records. There were 254 people patting each other on the back as a reference to the community having Eímear's back because the Government has not had her back to date but the community has. Local people have been tremendous, absolutely inspiring. However, they can only be expected to do so much. They have done their bit. Will the Department of Health and the Government now do their part and make up the shortfall for an Irish citizen in her time of need for life-saving surgery? We got answers about the treatment abroad scheme. I realise that the treatment abroad scheme covers only the European Union and the European Economic Area. I know that. However, there is the facility for the Department to fund treatment in the US under exceptional circumstances if it cannot be done in the EU, which is on guidance from Eímear's consultants. The Government already funds patients to travel to the US for specialised medical treatment but on an exceptional basis. An exceptional basis, as the Minister of State knows, can be made under three specific conditions. There is the high-cost drugs treatment protocol. Second, there is the out-of-State policy application. Third, is the exceptional circumstances clause, which is what I am asking about. Patients have historically received and secured funding to go to US-based medical centres for rare conditions and for extremely complex procedures when an Irish public consultant provides strong clinical justification that this care is essential and proven. Eímear's case fits the criteria. I have gone through it with HSE personnel. It fits the criteria. All I want to know is whether the Government will step in. It is small money in the greater scheme of things in terms of expenditure. This has to be done as a matter of urgency. I hope the Minister of State and the Department will have a positive answer for us, the people of Arklow and the family. --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-05-20/debate/main Retrieved: 2026-09-28T05:50:47+00:00 Sitting date: 2026-05-20