The Chronicle

Using grief to push for positive change

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Mackenzie’s Mission

Author: Rachael Casella Publisher: Allen & Unwin RRP: $29.99 Reviewer: Mary Ann Elliott

RACHAEL Casella and her husband Jonathan both work for the Australian Federal Police in Sydney.

After desperatel­y trying for a child, the young couple was thrilled to welcome their baby Mackenzie into the world and to start their new lives as parents.

Little did they know that in a few months they would be tested almost beyond endurance.

Like many other couples starting a family, Rachael and Jonathan had no idea they were both carriers for a genetic disease, and that one in 20 babies are affected by genetic birth defects.

Their daughter was one of those babies, and Mackenzie’s Mission is Rachael’s beautiful and heartwarmi­ng account of Mackenzie’s life, their loss, and a journey through IVF.

The Casellas had no family history of genetic conditions, but their daughter Mackenzie passed away at seven months and 11 days from spinal muscular atrophy (SMA).

SMA is an inherited condition. Since then, they have lost three further babies during various stages of pregnancy.

Determined that other couples should not go through the same heartbreak, Rachael and Jonathan are now champions for genetic testing.

Thanks to their efforts, the Australian Government announced $500 million towards genomics research, starting with a $20 million pilot study of reproducti­ve genetic carrier screening, called Mackenzie’s Mission.

The mission will screen 10,000 couples across Australia for more than 700 severe, childhood-onset genetic conditions, allowing prospectiv­e parents to gain informatio­n about their likelihood of having a child with one of these genetic conditions. The threeyear pilot research study aims to determine the evidence for making free reproducti­ve genetic carrier screening available to all couples in Australia and is being officially rolled out nationally over the next months. Rachael’s is a story of triumph over adversity, using grief, love and loss as a driving force for positive change. Her heroism is monumental and her ongoing journey through IVF is ever-hopeful. Heartbreak­ing but at the same time inspiring, this is a very important book for anyone who’s lost a child or is desperatel­y trying for a child. It’s about unimaginab­le grief but also about finding resilience and purpose through incredible loss and heartbreak.

Little Mackenzie will continue to have a powerful impact through the work of her remarkable parents.

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