I am Julie Cini, CEO of the Spinal Muscular Atrophy Association of Australia, Inc. which I founded after losing both my children to Spinal Muscular Atrophy in 2005 and 2007. I hope that this space is where you can be inspired to grow and make a difference in someone else’s life like I do.
Spinal Muscular Atrophy is the number one genetic killer of infants under the age of two but can occur in both children and adults. The rare genetic disease causes progressive deterioration of motor neurons in the spinal cord. This results in weakness and wasting (atrophy) of the voluntary muscles. Sadly there is no cure in Australia or abroad, highlighting the desperate need for research.
I had never heard of this disease before I was thrust into this world, at only 10 months of age, my first daughter Montanna Jean Brownlaw died on June 25, 2005. In the midst of dealing with the loss of my daughter, came the death of my partner, Ross Brownlaw who was struck by a truck as he turned into the driveway of their family home in May 2006, whilst celebrating the pregnancy of their unborn child. There was a one in four chance I cold have another child with SMA1 and although knowing the risks, went ahead with the pregnancy.
Zarlee Rose Brownlaw was born on December 13, 2006 and was soon diagnosed with Spinal Muscular Atrophy Type 1 She succumbed to the disease on Christmas Day, 2007 aged 12 months.
My passion for helping others stems from my training in disability and community services. Also my intimate experience with the effects of Spinal Muscular Atrophy has driven me to establish the organisation as a support network for affected families. In addition, I hope to aspire to expand SMA Australia’s Australian presence through greater public awareness, education and information so the medical fraternity can understand and better treat Spinal Muscular Atrophy.
I strongly believe in creating a future that encourages awareness and shares my experience in hope of creating much needed change.I have had extensive media exposure, including The Woman’s Day, Herald Sun, Fox FM, 3AW, Empower Magazine and Melbourne Child.
Should you wish to interview me or have me attend as a guest speaker, please do not hesitate to contact the SMA Australia office on (03) 9796 5744. She is an inspiration to all those who hear her speak.