Our Charity Partner
Seeking a glimmer of hope Meet Goldie, daughter to Simon and Cristina Digby and baby sister to Jasper and Portia. Goldie is one of 40 children in Australia diagnosed with A-T. Ataxia telangiectasia (A-T) is a rare, incurable disease often described as the worst parts of cerebral palsy, muscular dystrophy, and cystic fibrosis, along with a severe risk of cancer and lung disease. Children like Goldie with A-T experience: Loss of balance and mobility, confining them to a wheelchair by age 10
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No immunity from sickness, and prone to serious and potentially deadly infections
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No coordination, making it difficult for them to read, write, or eat with other children
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The need for a feeding tube to prevent aspiration to avoid lung infections.
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A 1,000 times greater likelihood of cancer than the general population, without being able to receive standard treatment due to radiation sensitivity
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Poor quality of life and social isolation
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Limited lifespan, with few children living past 25.
After learning of Goldie’s diagnosis, Simon and Cristina immediately sought information. They discovered BrAshA-T, a charitable foundation supporting research into a cure while creating a support network for other families dealing with A-T.
Initial research undertaken by the Wesley Research Institute, has shown the use of a dietary fat supplement has the potential to significantly boost energy metabolism and improve neurological symptoms. In May 2020, Federal Health Minister, Greg Hunt granted funding of $2.46m for a 12-month trial for the 40 Australian Kids affected by A-T. Whilst this trial is focused on giving these children a better quality of life – it is not a cure. More funding is needed to continue treatment for children in Australia and to take the trial to these little A-T superstars globally. Goldie’s family are currently undertaking a fundraiser aimed to raise $200,000. By donating to the Wesley Research Institute’s quest for a cure, you can give hope to children like Goldie. To find out more about how you can help, please visit www.brashat.org.au •
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BrAshA-T welcomed the Digbys with open arms, providing a wealth of information about this rare disease. They also introduced the family to Dr Martin Lavin, who shared information about a proposed clinical trial aiming to slow A-T’s progression until a cure is found.
A-T usually sees kids confined to a wheelchair by the age of 8 or 10. If successful, the trial may help slow the progression of A-T to the point where they can avoid the wheelchair until their teens.
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