NSLHD News April 8 2022

Shelley Beverley discovered she had Mitochondrial disease just five years ago

Australia to introduce ground breaking technology to target debilitating Mito disease

Clinicians, researchers and patients have welcomed a landmark law which will pave the way for remarkable new IVF technology to prevent Mitochondrial disease. Known as “Maeve’s law” after a young Victorian girl with a rare genetic disorder, the legislation was passed by Federal Parliament allowing the specialised IVF procedure to be carried out in Australia. It will involve replacing faulty mitochondria with healthy mitochondria to greatly reduce the risk of a child inheriting the disease. Mitochondrial disease can be devastating, causing major organ failure, blindness, deafness, brain disorders, muscular problems and early death. About 50 babies are born with a severe form each year, and many die before the age of five. The Kolling Institute’s Executive Director Professor Carolyn Sue is a globally recognised expert in this field, and says the new law is a tremendously important step for many families impacted by Mitochondrial disease. “Maeve’s Law will help provide families affected by

this inherited disease with the best opportunity to have a healthy, biologically related child,” she said. “It will provide hope and may be life-changing for many families, particularly those where multiple generations are affected. It may help relieve the enormous emotional, physical, social and financial burden on affected families. “Australia has a long history with procedures involving assisted reproductive technologies and an excellent regulatory environment. This new step will provide families with access to the most advanced technology in the safest possible way.” One woman who may benefit from the landmark decision is 37 year old Shelley Beverley. She discovered she had Mitochondrial disease just five years ago following the death of her mother. Her brother Neil also tragically died from the condition at just 34. Shelley has a heart condition, hearing loss, muscle weakness and diabetes, which are all linked to the disease.

Shelley and her husband James have welcomed the passing of the landmark law. “This law gives us new hope of having our own healthy biological child without the fear of passing on this devastating disease,” she said. “Having lost so much already, it is a dream come true, one that we have longed for. “This procedure is a huge milestone that will genuinely save lives and an incredible amount of unimaginable heartache.” It’s anticipated women undergoing the procedure will be supported by RNSH’s clinic for Mitochondrial disease patients, the largest of its type in Australia.

Kolling Institute’s Executive Director Professor Carolyn Sue



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