Paschal Mooney (Fianna Fail)

Cuirim fáilte don Aire. Bhí mé ag caint ar maidin ar Riar na hOibre ach níor labhair mé i nGaeilge, cé gur seo seachtain na Gaeilge. Gabh mo leithscéal mar gheall ar sin. Like many of my colleagues, I have only school Irish however Seachtain na Gaeilge is important and something I fully support.

I wish to focus on one issue in this debate but first I wish to declare an interest, something I have in common with my colleague on the other side of the House, Senator Mary Moran, with whom I have had many discussions on the matter. She will welcome any revelation of our respective experiences. Both of us are parents of Prader Willi syndrome children. This is a rare disorder, genetic in origin. It is primarily an eating disorder although not exclusively so. One of the great difficulties is early diagnosis. We were fortunate in that our daughter, Siobhán, who is now 22 years of age, was born in the National Maternity Hospital, Holles Street. It became obvious immediately that she had what was termed "floppy baby syndrome". Tests were carried out by the staff and within three weeks we got the result of a genetic test which, at the time, had to be sent to London. I understand these tests can be carried out in Ireland now. They were able to establish and identify what was a completely alien term to us and to some of the doctors in Holles Street on account of its rarity.

Prader Willi syndrome is named after two professors from Switzerland, Professors Prader and Willi, who, in the late 1950s identified a deletion of chromosome 15 which leads to a mild 5% reduction in physical and mental capacity. Those affected have special and particular needs. We are fortunate in that the main problem of our daughter, Siobhán, is an overeating problem. I will put it at its starkest, something to which Senator Moran can testify - I understand her boy is 14 years of age. Left unattended, our daughter would effectively eat herself to death. Those affected do not have the capacity to know when they are full. The are, to use an American parlance, permanently hungry. Since it is a rare disease it is not in the mainstream of research in the same way as what might be termed more "sexy" or "popular" rare diseases. I am grateful to Senator van Turnhout's group who have afforded me an opportunity to raise this.