Dublin South West TD, Seán Crowe, has called on the Minister for Health, Simon Harris, to urgently examine introducing an improved health screening program for rare diseases in new born babies. Up to 1 person in 12 in Ireland may have a rare disease at some stage in their life but the current screening programme for new born babies only checks for a very small number of rare diseases.
The Sinn Féin TD raised the issue in the Dáil after meeting with the parents of children with rare diseases in Leinster House and said he was deeply moved by their personal stories.
Deputy Seán Crowe said:
“I met with parents of children with rare diseases who gave a group of us TDs and Senators some background to the challenges facing their children. You would have to be made of stone not to have been moved by their personal stories.
“They want to see the establishment of an expanded screening program for newly born babies in Ireland, similar to the one that is currently operating successfully in Italy and checks for 40 known diseases.
“In Ireland the only way many of these rare diseases are detected is if a child misses a developmental milestone, for example, starting to crawl, walk or talk. This critical phase in a child’s development can be lost and unfortunately in many cases, the system only reacts when a child with a serious and rare illness falls critically ill.
“In many cases parents with critically ill children have to travel abroad for treatment and there is currently no official financial support for these families. Many are reliant on savings, borrowings, voluntary organisations, and the community at large to support them in probably at the most difficult time in their lives.
“One parent spoke of being in Tallaght University Hospital on a laptop, as their child fought for her life, trying desperately to find answers and information about their child’s illness by their symptoms. We need to do better.”
“The Italian screening system is much more proactive and the Irish parents I spoke to believe if it was replicated here it would mean that the more than 50 children born every year with a rare disease would be identified, able to access medical support straight away, and not have to wait until they are critically or seriously ill before supports kick in.
“This is about saving a child’s life and protecting the child’s development. It is about saving children the heartache of being prodded, poked, terrorised and hurt while attempts are made to find a vein or carry out a medical procedure while parents look on in horror.
“It would also save the health service hundreds of millions in medical and long-term care, as it has already done in Italy.
“In the Dáil I raised the need for the Irish Minister of Health to meet his Italian counterpart and to urgently examine the possibility of implementing such an important lifesaving screening program here. The screening system in Italy is working and they are prepared to allow their system to be replicated. It is now up to Irish politicians and senior health planners to make it happen.”