David Norris (Independent) | Oireachtas source

It needs to close Stepaside Garda station and reopen others.

Yesterday I was very surprised and taken aback to discover that the farm fatalities Bill had collapsed. I had attended an important briefing and made provision to speak to it, but I was not able to do so. The briefing was attended by a very brave man by the name of Les Martin. He has three children - a daughter and two sons who suffer from the rare disease metachromatic leukodystrophy. Cathal was diagnosed with it when he two and a half years old when it was too late for him. Mr. Martin is in the dreadful situation where, as a father, he is watching his son die slowly. Ciarán was taken to Italy for six months. There is a real need for an expansion of a national screening programme. We need laws to protect children and provide for full screening programmes for newborns, as well as support for and recognition of the families of these children. In Ireland there is screening for eight rare diseases only. The figure is 35 in the United States and 26 in Hungary. In one year the figure went from four to 40 in Italy. Those involved with the Italian programme have enthusiastically offered to help Ireland to implement such a programme. The cost is €50 per child. By spending €3.5 million hundreds of millions would be saved in subsequent treatment costs. There are 62,000 children born in Ireland every year, of whom one in 1,250 will have a rare disease. The HSE states it is possible to implement such a programme immediately. Why, therefore, is it not being done? Children are dying at the rate of one per week and they are dying unnecessarily. By spending a small amount of money this country could save those children. Let us do it. I am calling for a proper recognition of rare diseases day in Ireland on which we should invite families and as many of the children as possible to Leinster House to meet us and see the facilities. I am calling for an urgent debate on this important issue. The people of Ireland need to know that 50 children are dying unnecessarily each year in slow and often agonising circumstances, not to mention the terrible distress of their parents.I salute Les Martin for his courage and bravery but I cannot imagine what it must be like as a father. I hope that Ciarán will be all right. Cathal is in his last stages. This is a terrible tragedy and it is an avoidable one.