John Brady (Wicklow, Sinn Fein) | Oireachtas source

Two months ago, I met with Les Martin and I know the Minister knows Les, Lynda and the family. He is a constituent of ours and of Deputy Donnelly. He is a husband and a father to three young children. Two years ago, both of Les and Lynda's sons, Cathal and Ciarán, were diagnosed with a rare genetic terminal condition. At the time of diagnosis, Cathal was almost two years old and, unfortunately, it was already too late to treat him. He was expected to live to the age of five. He turned five last month. Ciarán has been engaging in a medical trial in Italy and that is expected to save his life.

The delay in diagnosis is what has Cathal's young life on a knife edge, as Les has said himself. If Ireland's newborn screening programme met international best practice, Cathal and his family would not be in this most cruel position, nor would the 50 or so other Irish families that are needlessly being destroyed every year because of our failure to expand our screening programme. We have an opportunity to make sure no other young life is destroyed and that no other family will have to face this immeasurable suffering by simply expanding our newborn screening programme.

At birth we screen for only eight conditions, whereas many of our EU counterparts go way beyond this. Italy tests for 40, Portugal tests for 25 and Sweden tests for 24. I want to take this opportunity to commend Les, not to plámás him or anything like that because I know he would not appreciate that but I commend him on stepping up selflessly and taking action by doing the job of this House and bringing forward the solution in expanding our newborn screening programme. He has handed us the solution based on the successful model in Italy. I know the Minister has looked at it and he has spoken with some people from Italy who are engaged on this. We need to take that solution and we need to make it happen here in this State. We can do better and we need to do better, for Cathal, for his family and for every newborn brought into this world.

That means supporting our amendment to this motion here this evening, to ensure that newborn screening is expanded and to take action to ensure this programme can be extended this year. We need to do it this year and we also need to guarantee that every child born in this State has the right to be screened at birth for any disease for which there is a viable treatment. If that needs legislation, we need to ensure that legislation is brought forward immediately. The costs are minuscule for rolling out this. We are only looking at €50 per child born. Those are the costs I have been given.

I am asking Deputy Donnelly and Fianna Fáil to accept this amendment and I am asking the Government to support the amendment and to support the motion because we owe it to the Martin family and to all the families out there that this State has let down by not expanding our newborn screening programme.

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