Joe McHugh (Donegal North East, Fine Gael)

I thank my colleagues for speaking on this motion and for their insights. Over recent days, I have learned of a few personal stories and connections of some Deputies on this side of the House. I also thank my colleagues in the Labour Party and Sinn Féin for trying to bring magnanimity to the debate. I acknowledge the role of the Government, which has given time to its motion. I acknowledge the Minister of State, Deputy Moloney, for doing this and the backbenchers' participation.

We must move forward, the way to do which is through constructive negotiation via the Health Research Board, HRB, the Department and the Government. For the affected persons in the Visitors Gallery and those who are listening, the greatest injustice that we as parliamentarians could do them would be to leave the issue alone after today, to make points and to give false hopes and expectations. We should have a deep cognisance of whether we go down that dangerous road after this motion.

The issue comprises three elements, which have been addressed. We are considering the possibility of introducing EU and international standards. Deputy Connaughton, a representative from the west and a farmer, knows all about my next point. Why is it that every time an EU directive on best practice in animal husbandry or fisheries sustainability lands on the desk of the Department of Agriculture, Fisheries and Food or, as Deputy Perry is aware from his time as a committee vice chairman, the then Department of Communications, Marine and Natural Resources, our nation jumps to implement it? In this case, if we introduced a single element of international standards and care, everything else would fall into place.

There is not even an official register. The number of 88 boys has been mentioned, but anecdotal evidence and information from Duchenne Ireland refers to 150 boys. We need to get them on the register. When we cross the Border into Northern Ireland there is a register but there is none here. Why is that the case? The Minister of State should forget about the funding issue and looking for extra money in these recessionary times. That is not the issue. The issue is about introducing international care standards.

I would like to leave the Minister of State with one example, that of Darren McDonagh, whose anniversary occurs this year. Darren was from Buncrana in County Donegal and 13 months ago he travelled to Buswells Hotel to campaign for DMD research and a clinical trial site in this country, when he was 16 or 17 years old. He knew his time was coming near an end, but in his name, with the support and consent of his parents, he still wanted to campaign for the boys that still have a chance and some hope. Regarding the best care and standards, is it right that while Darren was going through his last number of years, during which time his health was declining, that he had to leave Donegal at 4 a.m. for an appointment in Dublin at 9 a.m.? When he arrived for his appointment at 9 a.m., he still was not given priority because DMD is not prioritised under our national rules for the prioritisation of medical support. He would have arrived back in Buncrana at midnight.

Should we allow our boys to sit in a wheelchair for 20 hours? That is what he had to go through. In his memory, with the consent of his parents, he wanted to carry on this campaign and that is where we should keep the focus. I am seeking solidarity on this issue and a magnanimous nature to the debate. I appreciate the input from Members on both sides of the House, but we have to keep this issue moving forward.

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