“Mackenzie isn’t a sad story. She’s incredible.” So says today’s extraordinary guest Rachael Casella. She’s describing her beautiful daughter Mackenzie, who tragically passed away at seven months after being diagnosed with the fatal genetic disorder Spinal Muscular Atrophy (SMA).
Despite experiencing the most traumatic, devastating thing a parent could ever endure, Rachael and her husband Jonny are determined that Mackenzie’s life will not be defined by her loss, but by everything she brought to the world. “By experiencing and witnessing the end of someone’s life, you can enhance your own,” she tells host Georgie Abay. “I am a better person because of her”.
Since Mackenzie was first diagnosed at just 10 weeks of age, Rachael and Jonny have been a force in campaigning for access to genetic screening for parents. Their incredible dedication to the cause ensures Mackenzie’s legacy lives on, via their successful campaign Mackenzie’s Mission.
And with the release of her new book, Mackenzie’s Mission, Rachael hopes that sharing her story will continue to drive the change needed to ensure that more families don’t suffer needlessly.
Since losing Mackenzie, Rachael and Jonny have undertaken nine rounds of IVF, hoping to avoid another SMA diagnosis. They’ve had two further pregnancies which, excruciatingly, they have had to medically terminate due to genetic and chromosomal conditions. Mackenzie’s siblings Bella and Leo now join her as angels.
In today’s emotional, but uplifting conversation, we speak to Rachael about:
- Mackenzie’s early days and the diagnosis that changed everything
- Why she and Jonny chose not to trial a supposed ‘wonder drug’ treatment
- How they celebrated Mackenzie’s ‘monthday’ each month, knowing she likely wouldn’t survive to her first birthday
- Why travel and experiences were their priority for Mackenzie’s life
- Mackenzie’s passing and what that experience was like
- How to support someone through grief, and what not to do
- Her experience of IVF and why she feels she was naïve going into it
- The story of Bella and Leo
- Mackenzie’s Mission and what it has achieved
- How sharing snippets of Mackenzie’s life on Instagram turned into a book
- Why she believes she is a better person for having gone through what she has
- Why her message is one of love and joy