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Mitochondrial disease – A mother’s story
In late 2013, Jane Cleary watched helplessly as her baby boy Archer died from mitochondrial disease at seven months of age.
She says anybody who spent a moment in her shoes would support medical research.
“It is the cruellest and most horrible disease and yet it’s invisible,” Jane says. You don’t know about it until you have a child who develops symptoms.”
Archer was a smiley, active baby, but unable to put on weight. He also had liver problems and was profoundly deaf.
Jane and husband Dave met a large number of specialists in Archer’s short life and were given many reasons for Archer’s condition.
“We took him into hospital in April and it was just 14 hours from the time they tried to convince me that he had a mild virus to the time he died. It’s not just the public who need to know more about mitochondrial disease, it’s all health professionals,” Jane says.
Professor Aleksandra Filipovska from the Harry Perkins Institute of Medical Research, who is conducting ground breaking research into mitochondrial disease, agrees that there needs to be more awareness and recognition of the condition, which shows up in different ways.
“Organs which use a lot of energy such as the brain, muscles and heart are packed with tiny mitochondria and any damage to them can cause terrible disorders,” Professor Filipovska says.
“At the moment it’s very sad for children with mitochondrial disease as there’s no treatment or cure and medical professionals can do very little to help. We need to change this.”
Professor Filipovska’s group is applying new technologies which will help doctors diagnose mitochondrial diseases. Her research focuses on how mutations in mitochondrial genes can lead to disease and her team is working towards potential treatments.
Mrs Cleary says that putting funds into Western Australian medical research is vitally important.
“It takes time and it takes money to identify mutations in genes,” she says. “I hope that Archer’s life will make a difference to the way people think about mitochondrial disease.”
Jane, Dave and Archer’s big brother, six year old Jackson are now dedicated to raising awareness about mitochondrial disease. “We hope that one day no family will have to lose their child, the way we lost Archer.”
To find out more about mitochondrial research at the Perkins, click here.