My story begins like so many other families effected by Spinal Muscular Atrophy, SMA. I was thrust into the world of SMA in November 2004 after my first daughter, Montanna, was diagnosed with SMA type 1. Like so many others that have come before and after me, I had never heard of SMA before in my life. Before November 2004, I was like any other parent overjoyed and ready to start the next chapter in my life with my first child; little did I know how life altering this new chapter in my life would be.
After November 2004, my world was completely turned upside down including how I approach and perceive life in general because of this disease. I had so many questions about SMA, but everywhere I turned to seek the answers, I found little sympathy, aid or even acknowledgement. I soon realised that my mounting frustration and the denial of my daughter’s fate was of no good to myself or my family. If anything was going to change for the future I was going to have to be the one to make that change. I decided that the best action for my family and myself was to proactively deal with the disease, rather than submissively react to the disease’s course. With my partner, Ross, at my side, we founded the Spinal Muscular Atrophy Association of Australia Inc. to help and support all families, past, present and future, affected by this disease.
In the beginning, SMAAA was a home run operation by Ross and me. We worked tirelessly against our daughter’s clock to establish networks within the SMA community, contact other families in the similar situation and establish the basic foundations to support our fledgling organisation. After Montanna’s death at 10 months old, Ross and I were even more passionate and driven to continue and expand SMAAA’s reach beyond Victoria, to help other families in our situation all around the country.
Montanna’s death did not snuff out our desire to have a family of our own. In 2006, I became pregnant with our second child. Knowing the 1-in-4 chance that our second child would have SMA, Ross and I promised each other to not test for SMA because termination was not an option for us. This baby was ours. We believed that we were given this child for a reason. We had determined our child’s hair colour, personality as well as the child’s SMA genetic makeup and would love the baby regardless. Tragically, Ross was killed in a car accident as he turned into our driveway; I was four months pregnant. Later that year, I welcomed our second daughter, Zarlee, into this world. Soon after, she was also diagnosed with SMA type 1; the same severity of the disease as her older sister, Montanna, had. Knowing her fate, I decided to make her life as happy and joyous as possible for the time she was with me.
I decided to move to Melbourne in April 2007 in order to provide Zarlee with better medical care and to continue SMAAA’s growth. Once in Melbourne, I juggled my role as a mother for a sick child with my equally devoted role to support other parents in a similar situation through their own journey with SMA. My second beautiful baby girl, Zarlee, lost her battle with SMA on Christmas Day 2007. Now, I have two little angels watching over me at all times.
I truly believe that we determine our own path in life. I could have chosen to give up on life, wallowing in my miserable and horrific situation, but I could not do that to my family and loved ones who never faltered in their support. SMA not only debilitates its sufferer, but surreptitiously affects the entire extended family. I am only an individual, but through SMAAA I have been able to help, educate, learn from and provide support for other families to come to grips with the disease, empowering them to proactively fight against SMA.
I am greatly honoured and proud that SMAAA has survived and thrived since its humble beginnings. Ross and I never could have anticipated SMAAA’s dramatic growth over the past few years in response to the obvious need in Australia. Now looking forward into 2010 and beyond, I hope that SMAAA will become a leader for SMA in Australia providing up-to-date information and support to families, professionals and the wider general community.
I look forward to seeing what will unfold for SMAAA in the future and creating awareness for SMA and SMAAA with all of you!