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Let’s do record for my Mito

by
September 13, 2017

The Mooroopna water tower will go green this Saturday to convey a vital message.

Mia Bell with daughter Lucinda, 7, have Mitochondrial Disease, along with Lucinda's sister Katherine, 9.

The Mooroopna Water Tower will be included in a world record attempt on Saturday when it turns green as part of the Light Up for Mito campaign.

The tower will join more than 90 other monuments, including the Colosseum in Rome and Niagara Falls in Ontario, in the attempt, which aims to raise awareness about Mitochondrial Disease.

Light Up for Mito will kickstart Global Mitochondrial Disease Awareness Week which will run until September 23.

Mitochondrial disease, also known as Mito, is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure and potentially death.

Shepparton GOTAFE chief information officer Ian Bell’s wife, Mia, suffers from the disease.

Currently living in Adelaide, Mia, who inherited the disease from her mother, also passed the genetic disease on to her two daughters, Katherine, 9, and Lucinda, 7.

‘‘The type of Mito disease we have is called 3302 but there are many types of Mito, so it’s hard to talk about them all,’’ she said.

Mrs Bell was 25 when she was diagnosed with the disease, but her children were as young as five when they received the news.

‘‘It was devastating, as a parent all you want is for your kids to be happy and healthy,’’ she said.

‘‘To find out they have an illness and that you gave it to them, it’s a very difficult thing for a family to go through.’’

Mrs Bell and her daughters take a range of supplements and participate in different therapies to manage their symptoms.

‘‘Fatigue is the main symptom, one of my daughters has a serious hearing loss and it affects your balance and your ability to bounce back from illness,’’ Mrs Bell said.

‘‘At the moment we all have quite mild and stable symptoms, but any type of illness can trigger organ failure in any part of the body.’’

Mrs Bell said the risks associated with the disease made her determined to use the energy she does have to raise awareness and fundraise in the hope of one day finding a cure.

The Light Up for Mito event is one of the many ways the Australian Mitochondrial Disease Foundation (AMDF) is raising awareness about the disease this coming week.

‘‘It’s such an exciting initiative to have monuments around the world lit up in green (the colour for Mito disease awareness),’’ Mrs Bell said.

‘‘It’s the second-most commonly diagnosed genetic disease after cystic fibrosis.’’

AMDF is also hosting seven 35km Bloody Long Walks across Australia as well as its annual Stay in Bed Day in celebration of the awareness week.

‘‘Anyone with Mito disease would not be able to complete a 35km walk, which is why we have the Stay in Bed Day, so people within the Mito community can raise money while staying in bed all day,’’ Mrs Bell said.

She said while raising awareness was important, her main goal was to live in a world where if her daughters decided to have children themselves, their children either did not have the disease or the symptoms of it.

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