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The Guardian - AU
The Guardian - AU
National
Natasha May

Ivani’s genetic disease is worsening as she ages. Her mother hopes Australia’s new biobank will help

Four-year-old Ivani Shree
Four-year-old Ivani Pathre is one of the children suffering from genetic muscle disease and living without hope of treatment, but an Australian first biobank could change that. Photograph: Supplied by Murdoch and Bindu Shree

Bindushree Pathre remembers her daughter Ivani had “such a nice plump face as a baby”, but now she sees gravity pulling down her four-year-old’s cheeks as the muscles in her face become weaker.

When Ivani was diagnosed with a genetic muscle disease at four months, Pathre’s first response was to ask the doctors: “What’s the treatment? What can we do to help her?”

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