Joe McHugh (Donegal North East, Fine Gael)

I record my appreciation to Deputy Doyle for raising this matter. It took almost a week and a half for it to be accepted and I am delighted it has. His persistence highlights the sense of urgency and immediacy for the families concerned. Numbers form much of the basis for arguing which groups require financing but 150 families — a number which is growing — are affected by Duchenne muscular dystrophy. In the Minister of State's previous role as chairman of a health board he would have been familiar with the issue. Representations would have been made and there was a presentation to the Oireachtas joint committee on the issue. In the meantime, the 18-year old son of one of the families which was lobbying approximately a year ago has passed away. Families whose sons are aged eight, nine or ten are looking at a timeframe of maybe seven or eight years before they have to face a similar situation.

I received a response to a parliamentary question this week indicating this Irish Government would not fund British research. I know policy is policy and we must respect that. At the same time we must be imaginative and there are other ways to ring-fence funding for these conditions. The Government has indicated it would consider matching funding but the families do not have upwards of €750,000 to match the funding to achieve a total of €1.5 million. Two families in my constituency have embarked on a crusade and raised upwards of €70,000 on their own from the community. Their consciences would not be clear if the children pass away and they have not done their best. They have lobbied politicians and are now out in the community and have raised €70,000 in four weeks. We must assist them through transnational research. We refer to co-operation, integration and working together. It is not good enough for me to get a one line answer from the HSE, stating that the HSE does not fund British research, every time I table a question. There is a transnational opportunity and a way around this.

We cannot have families raising €70,000 off their own bat, with no assistance. Their backs are against the wall and they know the children will die when they reach 18 years of age unless there is some intervention. I ask the Minister of State for his indulgence.

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