Elise Barnes, Natasha Marinelli and Julie Cini are raising awareness about Spinal Muscular Atrophy. 49338 Picture: Kim Cartmell
By Kelly Yates
THE death of her two young daughters led a Berwick woman to set up the Spinal Muscular Atrophy Association of Australia.
Julie Cini wants to raise awareness about Spinal Muscular Atrophy (SMA) and educate the Casey community, saying the loss of her baby girls to the 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.
Both girls had SMA type one, the most severe and life-threatening form of SMA.
“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.”
Ms Cini said people with SMA generally appeared “normal” at birth.
“The symptoms develop as early as three months in the most severely affected, around one to two years of age in the moderately affected, and more rarely in the late childhood or adult years in mildly affected individuals,” she said.
Ms Cini said the Beaconsfield-based organisation was getting bigger and bigger.
“I started running it out of home. Now we’re helping 130 families from all over Australia,’ she said.
SMA is a terminal disease, she says.
“Both parents have to have the gene for a baby to then carry it as well,” she said.
“Parents need to be aware of the symptoms such as a weakened cry and cough. The children will also have trouble moving their arms and legs,” she said.
Ms Cini hopes to one day have another baby.
“I’ll have no choice but to screen my next partner,” she said.
“And if he’s also a carrier then we’ll have to look at other options like IVF.”
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.
Tea, coffee and biscuits will be provided. Cost is a gold coin donation.
For details about the Spinal Muscular Atrophy Association of Australia call 9768 9052 or alternatively visit www.smaaustralia.org.au.
