Oireachtas Joint and Select Committees
Thursday, 4 July 2013
Joint Oireachtas Committee on Health and Children
Business of Joint Committee
I ask members and those in the Gallery to ensure mobile phones are turned off; they should not be in silent mode but rather in aeroplane mode or completely switched off as they interfere with the broadcasting of proceedings.
Before we commence I want to congratulate Deputy Ó Caoláin who was, if I can put it this way, our representative on the Oireachtas Walk last weekend. I thank the Minister, Deputy Deenihan, Members of the Houses of the Oireachtas and their families and staff and, in particular, Deputy Ó Caoláin for his Trojan work in organising, supporting and participating in the Oireachtas charity walk in the beautiful Mourne Mountains in County Down last weekend. The Deputy has been strong in his advocacy of the group that benefited from the funds raised. I commend him and all involved on what was a joint venture between the Oireachtas and the Northern Ireland Assembly and they raised funds for Rett Syndrome Ireland. I congratulate Deputy Ó Caoláin and we now know why he looks so fit.
I have only confirmed for myself out of the exercise that I am anything but fit and that is the problem. I would like to record my appreciation of the work of the Minister, Deputy Deenihan, other colleagues in the Houses and our counterparts in the Northern Assembly, particularly those who turned up and participated last Sunday. I would make a last little appeal. The members will remember very well that Rare Disease day is the last day of February. It is very much built around a leap year, a rare day one in every four years, 29 February. On that day we hosted a range of organisations here which work with people with rare diseases across this island. One of those was those organisation that works with people with Rett syndrome, which affects young girls only and it presents after ten to 18 months. The child develops normally up to that point and then it is a nightmare for the family, for the parent or parents as the case might be, and for the child. It is such a difficult set of circumstances to imagine. I will just mention what Rett Syndrome Ireland said about the disease. It said: "Imagine the symptoms of Autism, Cerebral Palsy, Parkinsons , Epilepsy and Anxiety Disorder ... [and] ALL in one little girl. One has got to see it to understand it". We will close the collection tomorrow and for any of those who participated we would appreciate if they have any small little contribution to make if they put it in an envelope in the Minister, Deputy Deenihan's pigeon hole, my pigeon hole or Deputy Eric Bryne's pigeon hole. Anything at all small would be welcome because it is a collective effort. It is not a party but an Oireachtas endeavour with the Northern Assembly this year. Any small contribution they would like to make would add to the collection in support of this very worthy cause. There are only some 60 children with this disease on the island or Ireland but, sadly, that is 60 too many. We hope that advances will be made in regard to this serious disorder and that hopefully a time will come that this will never present again.