Michelle Rowland (Greenway, Australian Labor Party) Share this | Hansard source

I support this motion on mitochondrial disease and I commend the initiative of the member for Cook in bringing it forward. As a new mother, I think I can say what a lot of other parents know. When you are becoming a parent for the first time, it is very exciting, but, at the same time, you experience a sense of worry which is beyond any worry you thought you would ever have. When I was pregnant, I was doing a lot of work in the disability sector in support of an NDIS. That raised my own awareness about disability and it made me think a lot about the health of my unborn child—whether she would be born with any conditions or whether she would develop any conditions. I became very aware of the reality of illnesses which affect children.

Although my daughter appears to be a very healthy baby, it is indeed something when you hear about the experiences of people with children who are suffering from disease. You really cannot begin to understand the pain they experience or the ongoing struggle in their day-to-day lives. In this place you get an opportunity to do a lot of interesting things—and often some very good things—but I do think it is the cases and stories of individual constituents which bring a human face to what we do in this parliament.

In echoing the words of the member for Swan, who has just spoken, I would also like to raise the story of Pam Hausler, who is one of my constituents. Like the member for Swan, I asked for permission to tell this story. I did so because I think it sums up very accurately what the journey of mitochondrial disease must be for people who are suffering from it or who are family members of someone suffering from it. As was mentioned, Pam Hausler is a volunteer with the Australian Mitochondrial Disease Foundation in Sydney and I commend her for that. As the member for Swan indicated, the story of Shayli, her daughter, is a tragic one. Shayli was born in Adelaide in 1971 after a dream pregnancy. She was a month overdue but no-one seemed concerned, but after she was born by emergency caesarean alarm bells did start to ring for Pam. Pam describes, as the member for Swan has outlined, how Shayli did not feed very well; she got tired and fell asleep after eating very small amounts. She was slow to grow and could not control her sitting. Again, when you are a first-time mum you do not really know whether these things are normal or not, or whether there is an underlying reason for these traits. Eventually in June 1990 she was in a coma from which he never recovered, and she died in August aged only 19. At the time of her death the condition of mitochondrial disease had only just been recognised, so they had a diagnosis just before Shayli's death.

Interestingly, and this goes to the issue of awareness and research, in those days Pam was told that her daughter was one of only three in the world who suffered from mitochondrial disease, but recent research has shown the condition is indeed at the root of many illnesses and is as common as maybe one in 200 people. Pam works as a volunteer in the office of the AMDF in Sydney, and she does what she can to raise the general public's awareness of mitochondrial disease so that eventually the funds raised will allow research to find a cure and her beautiful daughter Shayli will not have died in vain. Pam says:

Mitochondrial Disease can happen to any person at any age and affect any organ. We now know that many women with mito have Cesarean sections as their bodies are too tired to labour, and we know it's at the basis of Chronic Fatigue Syndrome, Parkinson's Disease, Huntington's, Cardio Myopathy, some cancerous tumors, some diabetes and some hearing loss. In fact it can affect any organ that uses a lot of energy as the mitochondria are the cells in your body that break food down into energy. Everybody needs mitochondria in order to function.

Pam has also written to me in the following terms, and this strikes a chord with me:

We all work so hard when our children are small to give them everything they need; we have sleep deprivation, anxiety, stress and more. During my first few years with Shayli I was often suffering fatigue, muscle soreness and migraine headaches, hardly surprising when my child slept 2 hours in 24 (every night for 2 years), and in the mornings I was taking her for physio at the Children's Hospital, all of which I put down to being a single mother with a disabled child. Now I know we both had mito disease. What I am finding now is that as I age, my previous symptoms worsen and a few new ones have appeared.

Finding a cure is vital, but that can only happen through research which also requires awareness of this devastating disease.

Pam says to me:

Still in 2012 there is no cure or even satisfactory treatment due to minimal funding. In the last 2 years, with the aid of research—mostly funded by public donations—a study has been done showing several conditions are Mitochondrial based …

So research remains the key to the cure of many diseases and is as essential today as it was in years past …

I strongly agree with her sentiments. The other important thing to take from the story that Pam tells is the incidence of mitochondrial disease. The research that Pam has provided to me courtesy of the AMDF states:

Until the 1990s, mitochondrial disease was thought to be rare (1 in 20,000 people), but it is now recognised as the most common subgroup of inherited metabolic disorders. Recent research shows one in 200 people, or more than 100,000 Australians, may carry genetic mutations that put them at risk for developing mitochondrial disease or other related symptoms such as diabetes, deafness or seizures during their lifetimes.

I also highlight some other research findings that Pam Hausler has provided to me showing the comparative incidence of mitochondrial disease compared to other diseases such as MS, cerebral palsy and SIDS. Based on population, mitochondrial disease has a very high incidence rate at least in Australia. I encourage anyone who is listening to this debate to look at the AMDF website. It gives some quite instructive information on the symptoms and some of the possible preventive mechanisms. The website is amdf.org.au. I would also like to highlight some of the research attributed to that author—who I believe is Banzai—who gives a very good summary of mitochondria and some of its symptoms:

Have you ever wondered where your 'get up and go' comes from? The answer lies inside your cells were a multitude of microscopic structures called mitochondria are working industriously to maintain your health and physical well-being.

  …   …   …

Unfortunately, there are many reasons for mitochondrial inefficiency, including lack of exercise, poor diet, toxins and a range of environmental stressors.

There is a very interesting piece here about the importance of exercise. As we know from a number of other studies, exercise is said to be the fountain of youth and energy. Another cause of mitochondrial problems is an inherent genetic mistake or mutation in DNA and that failure to produce enough energy is called mitochondrial disease or mito. I encourage everyone to increase their awareness of this terrible disease. Also I believe it is important to point out, as other speakers have done in this debate, the importance of understanding that research will put together the symptoms and lead us not only to diagnose with more efficiency but also to treat this disease in future. As the member for Shortland stated, mitochondrial disease symptoms and proving its existence is like a jigsaw puzzle. That is one the key factors that comes from the AMDF's findings. The AMDF highlights three points for suspecting mitochondrial disease: where there is a common disease which has atypical features and/or three or more organ systems are involved and/or recurrent setbacks or flare-ups when there are infections in a normal chronic illness.

In conclusion, I believe Shayli's story needed to be told. We need to emphasise the importance of research and support. I wish I could spend a day in bed for this cause, but maybe I will just end up sponsoring the member for Cook. (Time expired)

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