Ivana Bacik (Independent) | Oireachtas source

I welcome the Minister of State to the House and commend my colleague, Senator Norris, on proposing this important motion which I am delighted to support and which I and my Labour Party colleagues co-signed. I also commend Senator Boyhan who ably seconded the motion. I pay special tribute to Les Martin, who was in the Visitors Gallery and has been present all afternoon along with Lynda and their children Holly, Cathal and Ciaran. They had to wait a good deal of time for the motion to come up, but they have been tireless in campaigning and calling for the expansion of newborn screening as called for in the motion. They have shown incredible courage while dealing with their heartbreaking story of having two sons who are battling the rare disease of metachromatic leukodystrophy. It shows incredible courage to do what they have done and to keep working to ensure that other children and families do not have to deal with this in the same way. It is good to hear a majority of strong support from across the House for this important motion. It is unfortunate that some irrelevant issues were raised by the previous speaker, but I will not dwell on them.

Through Senator Norris, Les Martin has provided us with evidence of very careful research and extensive information about the sort of expanded newborn screening programme that is being proposed. I am very grateful to him for that and, in particular, for giving us so much information on the Italian law, which I wish to address. It is important to note that bill 167 which was passed in Italy in 2016 essentially does what Senator Norris's motion proposes. I am very heartened by the very positive response of the Minister, Deputy Harris, to the motion, his indication that this will be a priority issue for the national screening committee which has been established and his announcement that Professor Niall O'Higgins has been appointed as chair of the committee, which is very welcome. The Minister also spoke personally as a parent. I vividly recall, as is the case for most parents, the heel prick test carried out on my two children within a few days of their birth. Others have spoken on the very high rate of take-up of the test in Ireland. Senator Devine memorably referred to it as a rite of passage and she is correct in that regard.