Alan Griffin (Bruce, Australian Labor Party) Share this | Hansard source

I want to thank and congratulate the member for Fowler for bringing this matter before the parliament. I note his contribution and also that of the member for Barker. I will endeavour to try and cover some other elements of this particularly tragic and debilitating disease, although, given the central nature of their contributions, there will be a certain amount of overlap. I also only have five minutes, as is the nature of the structure of the debate today, so I will endeavour to be briefer than I would normally be. I will start by reading into the record an e-mail I received from a constituent whose family has been touched by this terrible disease.

Dear Mr Griffin,

My name is Jan Hill. The Spinal Muscular Atrophy Group represented us in a letter to you recently. My husband Brian I had two amazing daughters, Laura and Suzanne, who were both diagnosed at about nine months of age with SMA—Werdnig Hoffmann disease. Laura was born in 1978 and Suzanne was born in 1982. Both girls were in electric wheelchairs by the time they were four years old (neither had ever walked on their own) which gave them the independence they so needed, although that was somewhat limited to where the wheelchairs were accessible. Laura and Suzanne at different times attended the local Pre-school Rosswood where my husband made a ramp up to the front door. They both attended Rosewood Downs Primary School with the support of the principal and some wonderful teachers. My husband also made some ramps there so that the girls could access different rooms. The Education Department provided money for a ramp to a portable which was the music room. Originally I went to school twice a day but was on call all day every school day. After the first year and a half we managed to have a nurse visit the school at lunch times (whom we paid for) which helped immensely until many submissions to the Education Department later we were able to employ an Aide who remains one of our dearest friends. The girls were extremely bright both becoming Dux of Year 10 and Year 9 respectively at Lyndale Secondary College in Dandenong North. Accessibility there was somewhat limited and it was quite a job to get the Education Department to provide some money for some ramps. Even then there were areas that the girls could not access. Hopefully new schools being built today are totally inclusive. It has been some time since our daughters died (Laura at nearly 17 years of age in 1994 and Suzanne at almost 16 years of age in 1997). No amount of time minimises the impact they have made on everyone who knew them. Meeting Julie Cini a few years ago was heart-warming and somewhat confronting at the same time. She is an amazingly passionate person who seeks to get a better deal for everyone touched by SMA. Her own story is one of great sadness yet she is focused on bringing her story and the SMA Group to everyone's attention so that others might have the help and support that she and others did not have. I hope your meeting yesterday with Lynette and Elvira helped you to see for yourself not only what Elvira has to deal with on a day to day basis, just as our own daughters did, but also what the SMA group as a whole has to offer all families who are dealing with this very sad disease. It would be wonderful for our Government to become aware of this amazing group who work tirelessly to raise funds and awareness of SMA within communities. Perhaps with that recognition might come some big steps toward research specifically on SMA and hopefully genetic screening.

I do hope that you will be able to take Julie's message forward when the debate comes up in Parliament. You will be representing so many families of children and babies who have not had a chance of life and also those who have amazing talents and abilities but who are severely restricted by SMA. A small voice in the wilderness can certainly be the start of something bigger don't you think.

Yours sincerely

Jan Hill.

I did recently meet with representatives of SMA, both today and last week, in my electorate. Jan mentioned Elvira Alic, a young lady I met with who is struggling with SMA type 2, who is an example of courage in the face of absolutely horrific adversity. It was an honour and a privilege to meet her and to hear her story and those of others who are suffering from this debilitating disease. Others have made the point that it is often at a very young age that these children are tragically taken from their families. But in the case of Elvira—and the daughters of my constituent—the circumstances where it is clearly type 2 have resulted in debilitating conditions being experienced over many years. Elvira has exceeded the life expectancy for her circumstances and remains an example to all of the terrible conditions that we can face and of how to handle that in a stoic manner and with great courage. I urge the parliament: this is a matter which the government needs to look at. The sorts of conditions that we are dealing with here, and the sorts of examples about the future of policy here, I think are matters we should be endeavouring to take forward. (Time expired)

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