David Norris (Independent) | Oireachtas source

-----which was recently found to have been involved in a form of hazing. As far as I know, it was pretty mild but hazing is a very noxious practice. An attempt is now being made to suppress the college newspaper, The University Times, which published a report on same. It is shocking that a university body would try to stamp on freedom of expression in this way. Although I am a Knight of the Campanile myself, I strongly resist these motions and hope they will not take place.

The second matter I wish to raise is a rather sad one. I had a communication today from a man who seems to be a remarkable and good father to his two children, aged three and five. They were both perfectly normal, well developing children until the age of two. Suddenly they started to deteriorate and it turns out that they have a very rare disease called metachromatic leukodystrophy. They are both in a difficult situation but one has had treatment and may be stabilised. In Ireland we only test for eight rare disorders as opposed to the 35 recommended by the American Food and Drug Administration, FDA. In one year, the Italians have increased the number of rare conditions tested for from four to 40. This is an area in which we need to improve. We must align ourselves with the test programmes being conducted in Italy. We must increase the number of conditions for which we test because it is often significantly cheaper to test and treat rather than waiting until a chronic situation develops. I appeal to the Government to move in this direction and to increase to 40 the number of disorders for which we test and treat. That is the compassionate response. The father to whom I referred talked with so much passion about the fact that had this test been done and had his children been diagnosed early, they would now be in a much better condition. Although his situation is tragic, he felt the need to speak out on behalf of other parents to prevent them from being involved in a similar horrible situation.