Joe McHugh (Donegal North East, Fine Gael)

I welcome the Minister of State at the Department of Health and Children, Deputy Devins, to the House. I thank him and Dr. Philip Crowley in the Department of Health and Children for their efforts in respect of this issue. Not long after I was elected, I approached the Minister of State, Deputy Devins, and in fairness he showed very good leadership. He left politics out of the issue and met with me because he felt it was an important issue. He also worked at exploring different avenues for funding the scheme to fund research for children with Duchenne muscular dystrophy.

However, I am extremely critical of the way in which the families of children with Duchenne disease have been treated. As we know, Duchenne disease involves a shorter life expectancy than muscular dystrophy. With that in mind, we are looking at children with a life expectancy of between 18 and 20 years. Two families in my constituency have been through a very long and arduous three-year campaign. They have fought tooth and nail and used their own initiative and funds to go to Sheffield in the UK to find out about the best international practice in research, new models of research and intervention which would help their children.

When the parents of one family started out, their son Liam was three years old. He is now six. They live with the expectation that he will survive until the age of 18 or 20. They feel very let down because their expectations were heightened throughout the process. They were given hope and open-ended promises in terms of getting funding for research for their children.

The second set of parents from my constituency had two children with Duchenne muscular dystrophy, one of whom is two years old while the other is seven. These parents have spent three years lobbying and campaigning and have been given the false expectation that they would get funding.

I wish to put on the record a one-line answer in correspondence dated 8 February 2008 which I received today, 14 February. The sentence was "Regarding your request for direct Irish Government funding for the trial, there is no mechanism or budget for Government funding to UK health research". That one sentence says it in very black and white terms. Why were these parents and other parents throughout Ireland not told that this was not an avenue to go down from the very beginning? Why were they not told that they would not get Irish Exchequer funding for research in the UK? This is a nonsense because we are not funding UK research. We are funding hospitals within the UK who will help the survival rates of children in this republic.

This is the crux of the argument. These parents feel let down. They were given expectations and false hope. They used their own energies and funds and are now left in a complete vacuum as to what they can do. In fairness to the Minister of State and Dr. Crowley, there are proposals within this correspondence which the parents may attempt to use but, believe me, they have tried these avenues and know that these are not the routes to go down. This is a very specific question of funding. International testing is being carried out in the UK from which these parents could benefit and which could help their children live longer. It is as simple as that. The Minister of State has been through this experience with his own family and I ask him to empathise with these people who are at a crossroads and do not know where to go. They want his help and that of the Government to allow them continue this journey and to ensure their children live beyond 18 or 20 years of age.

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