Michael Keenan (Stirling, Liberal Party, Minister for Justice) Share this | Link to this | Hansard source

I rise today to inform the House of a little known but devastating chronic illness known as mitochondrial disease. During Mitochondrial Disease Awareness Week in September, I was provided the opportunity to meet with my local constituents Don and Rely Beard and their 39-year-old daughter Pippa, who was diagnosed with the disease as a teenager. Mito, as it is commonly called, is a genetic disease that robs the body's cells of energy. It can be present at birth or develop later in life, causing physical, developmental and cognitive disabilities, sometimes even death. During our meeting, the Beard family discussed the need for greater awareness and research into the disease, which is why I'm here today to share their story. I undertook that I would raise it in parliament when I met with them.

At age 19, Pippa Beard was a happy and healthy teenager. She was attending university, had a few part-time jobs and socialised regularly with friends. One morning she woke up in a panic not being able to see. Her concerned parents rushed her to the emergency room and for the next few months doctors struggled to work out what was wrong. Pippa's blindness was thankfully only temporary, but she had to quit university studies and her part-time job, as she started to suffer from seizures and a loss of motor control on a weekly basis. It took doctors some 18 months to diagnose Pippa—mostly due to the lack of information about the genetic disorder at the time—with a type of mitochondrial disease known as MELAS.

The difficulty with a mito disease is that it has no definitive symptoms. It mimics so many other different illnesses at the one time that diagnosing the disease is extremely difficult. So, for the past 20 years, Don and Rely Beard have had to watch their daughter's healthy body shut down as a result of repeated seizures, balance difficulties and muscle weakness. Don and Rely are full-time carers for Pippa, but, as the disease is unpredictable, every day can be different.

Since she was diagnosed, the Beard family have been working together with the Australian Mitochondrial Disease Foundation to raise awareness, seek out treatment options and prevent it being passed on through future generations. Mito is not a disease that is widely known in Australia, yet one in 200 Australians carry the genetic mutation that could potentially lead to the disease developing. Family members can appear well and healthy but are unknowingly carrying the genetic defect, which can be passed on to their children and which, in most cases, is present through their mother's side. Unfortunately, there is no known treatment or cure for mitochondrial disease. However, research from the United Kingdom has found that it may be possible, through the use of IVF based procedures, to reduce the risk of the disease being passed on.

There is still a lot to be covered about the disease, but the most important thing, and what the foundation exists to do, is to raise awareness of it. I therefore encourage all of my colleagues to go to the Australian Mitochondrial Disease Foundation website to get further information about the disease. I thank the Beard family for coming to see me to raise my awareness of it. I am pleased to raise it here today.