A fairy tale for Mackenzie
Kenzie, that’s her nickname (Kenzy means ‘bright one’) was very little and so she couldn’t walk or even crawl yet.
Kenzie had beautiful eyes, big and blue. She had blonde hair, which was as light and fluffy as thistledown because she was still so little. She had fat little arms and legs, and tiny little hands and feet.
She was a happy little baby, quick to smile at her mummy or daddy, and giggle if anyone made a funny face, or told her a story, or sang a song.
Kenzie loved her food and soon grew into a bubbly baby girl. One day she tried to kick her legs, but they wouldn’t kick. Then she tried to wave her arms, but they would only move around a little bit. She was so disappointed that she cried.
We spent the next few months dedicating our lives to our sweet little daughter, travelling Australia and showing her as much life and happiness as we could in the short time she had left. Even though we were tortured by what we knew was to come, we were determined that Mackenzie would only know love, warmth and happiness.
When she was asleep we spent our time researching genetics, how this happened and what could have stopped our pain. Our research led us a flaw in our current medical system in relation to genetic carrier testing within Australia. So we began campaigning for change. We wrote to the Federal Government about Mackenzie, about what happened to us and what could have saved not only our pain, but also the pain of many other families.
Our campaign led to meetings with members of the Government including the Federal Health Minister Greg Hunt. Our campaigning worked and in the May 2018 budget the then Treasurer Scott Morrison announced a $500 million genomics project which would make Australia world leaders in genomics. The first program under this genomics project was announced as being a $20 million pilot for how to bring genetic carrier testing to Australia. The pilot was named Mackenzie’s Mission.
This was our daughter’s legacy, it was the least we could do for her.
On 22 October 2017, Mackenzie died laying in between us at Sydney Children’s Hospital, and our world shattered forever.
Since then we have spent our lives trying to understand how to live without our baby. It has led us to question life and everything within it but one thing we know is that we are lucky to have had Mackenzie. She gave us everything, made us better people, taught us about perspective and gave us a superpower that we hope to share with others, while trying to educate people about genetic carrier testing and Mackenzie’s Mission.
During this time we have struggled to have more healthy children. Our fertility journey has involved nine rounds of IVF and two pregnancies. Those two pregnancies, another daughter called Bella and a son called Leo, were found to both be affected by life limiting conditions, forcing us to choose to terminate for medical reasons.
I started sharing our story, simply as a Mum who wanted to talk about my daughter but slowly I found a community gathering around me. This community listened to me: my joy, my pain, my struggles and the lessons I was learning along the way. They lifted me up and cheered me on to keep going. As I began speaking about child loss and genetics, people started to reach out who had been affected by similar circumstances but who suffered in silence.
Then as our lives progressed to include IVF and termination for medical reasons, others began to speak up. I found that these hard and sensitive topics affected so many people and these conversations needed to happen.
This led to me creating this website, blog and now my book Mackenzie’s Mission. I hope that my words provide some comfort to others. I hope it makes people who are going through a similar journey feel less alone in what they are experiencing, and also open the eyes of others who haven’t experienced this loss.
Finally, I hope people see that we are not just a sad story. Our story is a life of love.