Sunshine Coast local fights for change after years battling mitochondrial disease

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AT JUST 19 years old, Sunshine Coast local Rebecca Patterson was diagnosed with mitochondrial disease (mito), an inherited, debilitating and potentially fatal disorder that robs the body’s cells of the energy they need to function properly.

Suffering from low lung capacity, severe muscle weakness as well as chronic fatigue and pain, Rebecca was forced to quit her job, and leave behind the social years of her early twenties due to the severity of her symptoms.

Now, four years on, at age 23, Rebecca is advocating for change as she fights for the legalisation of mitochondrial donation, a potentially life-saving IVF technique.

Mitochondrial donation is a way to prevent mitochondrial disease being passed on to the next generation of Australian kids. While mitochondrial donation is legal in the UK, it is not yet legal in Australia.     

“In order to save the next generation from experiencing the pain and suffering which mito has caused me, legislation needs to change in order to enable people to access mitochondrial donation here in Australia,” Rebecca said.

“Mito has impacted my life in a devastating way, not only have I missed out on life opportunities but I am in pain and fatigue every single day.

“Throughout 2020 I will continue to advocate for the legalisation of mitochondrial donation in Australia. Last year I hosted numerous education nights around mitochondrial disease in the Burdekin QLD area, each with the hope of getting one step closer towards the legalisation of mitochondrial donation,” Rebecca said.

Mito Foundation CEO, Sean Murray, said one Australian child born each week, 50 children every year, will develop a severe or life-threatening form of mitochondrial disease (mito)

“Legalising mitochondrial donation in Australia will allow parents to reduce the risk of their children developing mitochondrial disease and will prevent it being passed on through future generations,” Mr. Murray said.

In November 2019 the National Health and Medical Research Council (NHMRC) concluded the public consultation into the potential legalisation of mitochondrial donation, following recommendations from the Australian Government.

The Mito Foundation hopes that the findings of the public consultation will be made available early in 2020 together with an outline of the next steps towards legalising mito donation. 

For more information on the NHMRC process click here.

The Mito Foundation website: https://www.mito.org.au/mitochondrial-donation/

 
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