With special guest:
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Jonny Casella
… in conversation with Bill Kable
Before we hear from Jonny about the ground breaking medical mission inspired by little Mackenzie Casella we need to find out about Jonny and Rachael’s journey.
Fortunately not many of us face the tragedy and trauma that Jonny did after deciding to become a father. And having been through this valley of having a beautiful baby then losing her not many parents are prepared to speak candidly about what it all means.
In this program Jonny opens his heart to take us through the seven short months that he spent with his daughter Mackenzie while she battled with a genetic disease known as SMA (spinal muscular atrophy).
Jonny and his wife Rachael are both Federal Police Officers. Both of them prepared in the best way they could to become first time parents. Both were delighted when they were blessed with a daughter. But after only 10 weeks of this happiness the first clue came to indicate the path their lives would take. Checking on the feeding routine for their baby they were informed that Mackenzie was “floppy”. It did not take long after that to get the diagnosis that Mackenzie had a condition that meant a short life and for which there was no cure.
After enduring that shocking news the parents decided to make the most of their time and started on a series of adventures around Australia and in familiar places such as Centennial Park Sydney. They were able to lay down some memories for a lifetime. More than that Jonny and Rachael decided to make a memorial for Mackenzie that would benefit many other parents. Their mission became to promote more research into genetic testing.
At the national scientific meeting of the Human Genetics Society of Australasia held in 2018 the lead investigators Professors Edwin Kirk, Martin Delatychi and Nigel Laing invited Rachael and Jonny onto the stage when they introduced a plan for genetic carrier screening in Australia. Jonny and Rachael had been instrumental in obtaining the support of the Federal Government for the project with a $20m grant. The name of the project? Mackenzie’s Mission.
This is such a stirring story. How parents have turned tragedy into an enduring benefit to other parents. As their friend TV presenter Erin Molan has said “you will cry but you will also find comfort in this story.
You can read more in their book Mackenzie’s Mission: How one family turned tragedy into hope and love.
Jonny Casella
Jonny Casella is a police officer with the Australian Federal Police. He lives in Sydney with his wife Rachael, who also works for the Australian Federal Police.
Song selection by our guest: Sweet Child O’ Mine by Guns N’ Roses
Note: This program is an encore presentation of one first aired on August 13th 2020.