John Brady (Wicklow, Sinn Fein) | Oireachtas source

Unfortunately, when it comes to our national newborn screening programme, we are way behind international best practice. We only screen for about four rare diseases through what is commonly known as the heel prick test. Italy vastly expanded its screening programme over a very short time to include 40 rare diseases. This was done during one year. I know the Minister has engaged with the Italians. Unfortunately, our failure to meet international best practice has had a devastating effect on families across the board, not least some of my constituents - Les and Lynda Martin and their family. They have three young children, two of whom, commonly known as Cogs and Kiwi, have a rare genetic disease called metachromatic leukodystrophy, MLD. I know the Minister met them recently.

Unfortunately, Ciaran Martin received a late diagnosis because when he received the heel prick test, it did not test for MLD. His diagnosis has come far too late, his illness is terminal and he has only a short time left to him. It is a heart-breaking and devastating issue that has been traumatic for his family. Les Martin has begun a campaign to expand our national newborn screening programme. I know the Minister recently appointed Professor Niall O'Higgins as chair of the national screening committee, which, hopefully, will meet before Christmas to lay out its programme. A number of things need to happen.