“My mission is to inspire others to find their passion as well as encourage and empower them to leave a legacy”

Hello, I’m Julie, OAM

Sometimes in life we think we have it all planned out, what we wanted to be when we grow up, how we want to look when we get married, and where we want to live. Sometimes in life these plans do not always play out the way that we want…

I had those dreams and then life got in the way.

I met my partner who lived 5 hours away from me and spent six months travelling every weekend to see him, until one weekend I said, “I either move in or we go our separate ways”. Needless to say, I moved in. Life in the country did wonders for the soul. It taught me many life lessons. Some good and some not so good. 

Being in the country was also the place of my biggest achievement, and subsequently, the worst time of my life. My biggest achievement came in August 2004 when I had my first daughter Montanna. She was my proudest moment bringing a life into this world. She was a dream baby. She did not cry, she slept like an angel and I thought I was truly blessed.

My world came crashing down three months after she was born when she was diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA). The doctors told me there was no cure and she would most likely be dead before her first birthday. There was nothing they could do. I was told to take her home and love her till she dies. 

For ten months we struggled to understand and treat the symptoms she had. Ross and I tried to make sure our daughter had the best quality of life, until her death in June 2005. In that time, we also knew that there was a community out there that had no support. So six weeks after Montanna passed away we set up Spinal Muscular Atrophy Australia Inc. so that we could support those living with SMA here in Australia.

SMA is genetic condition and when we were blessed with a second pregnancy in March 2006 I wanted to test, but Ross said it wouldn’t happen twice, and he felt we would be blessed with what we were given.

My world came crashing down one late May day when Ross was turning into our driveway and was hit by a truck (we lived at the bottom of a hill and the sun was setting). He was killed instantly. My world had now been ripped apart eleven short months after losing our daughter. How could I carry on? 

I did carry on, it was very hard at first, but I was pregnant and had something beautiful to look forward to – my second child. 

Zarlee was born in December 2006 and when she held her arms up above her head one morning soon after her birth, I snapped a photo thinking oh she didn’t have SMA. The doctors had tested her at birth. Just after Christmas that year my world came crashing down again when the doctor made a house call and delivered the same fatal news, “Zarlee has SMA and she will die before her first birthday. Unfortunately Julie, you know the drill”. 

I constantly questioned and berated myself. “How could this be? What was I doing wrong? What person did I run over in a past life? I’m not a bad person. Why me??”

Even with all these thoughts running through my head constantly, I became more determined to give Zarlee an amazing life. We did so many things that gave her good quality of life. Her first illness was her last illness and she passed away on Christmas day 2007. She was just twelve months and twelve days old. 

Losing your whole family in two and a half years to the day, is truly an unbelievable story. Yes I do agree, but at the same time, my life goal is educate others in what I have been able to achieve for the SMA global community as a result of this tragedy. I have left some amazing legacies, and I know when I see my family again, they will be as proud of me as I am.

I’m not going to lie and tell you that leaving a legacy is easy. It has been the hardest thing that I have ever had to do. But the way that it makes me feel is better than an adrenaline rush. That euphoric feeling of giving back and helping others can never be beaten. 

I look forward to showing how you too, can create your own legacy. I would love to connect with you and support you through your journey.

P.S. I am thrilled an honored to be acknowledged in the King’s Birthday List with an Order of Australia Medal. This is the cherry on top for the hard work and dedication and years of blood sweat and many tears to get to where we are today! The whole landscape of SMA has been dramatically changed and I honoured to say that was because of me!