Oireachtas Joint and Select Committees

Thursday, 4 July 2013

Joint Oireachtas Committee on Health and Children

Business of Joint Committee

9:30 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

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.

Comments

No comments

Log in or join to post a public comment.