Paul Connaughton Snr (Galway East, Fine Gael)

I congratulate my colleague, Deputy McHugh, on his tenacity in putting this debate on the floor and on his compassion for those who suffer this dreadful disease. I have been briefed by a number of families and there is no doubt that the disease is a heartbreaking one. I am told that it affects approximately 150 boys and is seemingly on the increase. As this particular strain of muscular dystrophy is not well known among the public, a reason for today's debate is to raise awareness. The disease's debilitating characteristics claim young lives, usually before they reach 20 years of age.

Thankfully, there is a little bit of good news for the boys who suffer this disease. Parents and families hope for good news when they get up every morning. If Deputy McHugh's suggestions become a reality, the beam of light at the end of the tunnel will grow a little. I must put on record the great efforts of Duchenne Ireland, the organisation in question, for raising more than €300,000, a large amount of money for the small number of people involved.

As has been pointed out, Duchenne muscular dystrophy, DMD, is one of the world's lethal childhood genetic diseases. The research being carried out in NUI Maynooth seems to provide a promising new approach to the disease's treatment. Coupled with the work under way in the UK, there is reason for hope. If either side of the House can do nothing else except push the idea that there will be a major breakthrough for the families and sufferers some day, today will have been worthwhile.

In fairness, the Minister of State, Deputy Moloney, would be the person on the Government side most likely to push this issue. However, I hope that the Minister for Health and Children is listening to the debate. To put it bluntly, I had expected her to be sitting across from me. That is her role and it is important that she and the HSE hear everything that we have mentioned. I believe the Minister of State has compassion for this issue, as much is necessary.

Many of the families in the Visitors Gallery are visiting Dáil Éireann for the first time and cannot understand why the motion will be voted on. Given the fact that Deputy McHugh has striven to address this issue for a long time, I expected the Government's acceptance of his Bill without significant reservations and the Deputies of this assembly to act in unison to help the people affected. They have a long road ahead of them. It is a pity that there must be a vote. Even so, I hope that we have raised the profiles of the disease and those involved.

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