Awareness about killer disease

By Kelly Yates
THE death of her two young daughters led a Berwick woman to set up the Beaconsfield-based Spinal Muscular Atrophy Association of Australia.
Julie Cini wants to raise awareness about Spinal Muscular Atrophy (SMA) and educate the community, saying the loss of her baby girls to the rare disease was every mother’s worst nightmare.
One in 30 people carry the SMA gene, an inherited disease that results in the loss of nerves in the spinal cord, which then makes the muscles connected with those nerves weaken. Ms Cini said the most common muscles affected were the neck, trunk, legs and arms.
The 35-year-old says her life was ripped apart when she lost her little girls.
“Montanna was born in 2004 and at 10 months of age she died,” Ms Cini said.
“Then in May the following year, my husband Ross was killed after being hit by a truck turning into our driveway. At the time, I was 13 weeks pregnant with our second child.”
Ms Cini had daughter Zarlee, who died 12 months later on Christmas Day.
“No-one wants to lose their two children and a husband,” she said.
“But I knew they wouldn’t want me to be unhappy and sad so I set up the organisation to help others. I didn’t want anyone else to go through what I went through.”
Next month is world awareness month for SMA and the Spinal Muscular Atrophy Association of Australia is holding an awareness morning tea in Berwick.
The event will be held on Friday 6 August from 10am to midday at the Berwick Inn Hotel.
For details about the Spinal Muscular Atrophy Association of Australia call 9768 9052 or visit www.smaaustralia.org.au