Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

On Thursday 25 August I attended a meeting that was arranged by the member for Fowler and I was privileged to sit in the room with parents and grandparents who have been associated with spinal muscular atrophy and to hear their stories. I have to say that I was very close to tears as I sat there and heard Juli talk about her two beautiful children and to hear how she lost her husband and to learn that it has become a mission in her life to provide information to work for a cure and to not sit back and say, 'Poor me,' but actually get in there and try to make a difference and provide support to all those parents who find themselves in that desperate situation that she has been in. It is a privilege to actually have been associated with her. In this job so many of us end up seeing people who come to us with real complaints and they are absolutely devastated by the cards that life has dealt them. Instead of doing that, Julie was there saying, 'I'm going to make a difference; I'm going to change it'. I would like to commend her for that and commend the member for Fowler for bringing this important motion to the parliament.

When I went along to that meeting I did not know that one in five people carry this gene. It just shows you what a lottery it is; how fortunate all those parents are who have very healthy children. I did not know that when two parents of a child have that gene that there is a one in four chance of having a baby with SMA. I did not know that and I am a person who has been really involved in health issues for 20 or 30 years. It is something I did not know about. I felt that if I did not know about it, then the majority of the population would not know about it. I think it is really important to get that message out to people. The simple fact is that, around the world, a baby is born with SMA every seven hours. That is incredible; they are incredible figures. That shows that this is such an important issue. Genetic testing is an absolute imperative. We need to get behind the research that is being undertaken in a big way. We need to do something to stop the suffering of parents and not to forget those little people who are born with SMA. We need to address it and we need to ensure that the testing takes place and from the testing that proper research takes place and from the research then work towards developing a cure so that this is a disease that does not impact on any more parents.

In my role as a member of parliament I actually had a constituent at one time who had a little girl who had this illness. She nursed her, she looked after her, she ventilated her and she did all that hard work. There was not a day or an hour that she regretted putting in the effort to sustain her little girl. I know that SMA is the greatest killer of babies. I think that as a society, a parliament, a government we need to get behind the research that is needed to address this issue. We need to make sure that our society is educated about it and we need to act now to do every single thing that we can to support Julie and her research.

Congratulations, Julie, on the wonderful work and all those people who are here with you tonight on all the effort that you have put in to addressing this important issue. Thank you.

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