Undaunted: Julie Cini, right, and Kathy Ouzounis are organising the walk. Picture:Wayne Hawkins
WHEN tragedy knocked on Julie Cini's door, she wanted to do more than just cope.
Eight years ago, she lost her daughter Montanna to spinal muscular atrophy. Determined to help others in the same situation, she set up the Spinal Muscular Atrophy Association of Australia six weeks later.
Running the association had a healing effect on Cini and it gave her a purpose. She became pregnant again and things were poised to return to normal.
"I guess I was mad in a sense, but I knew I wanted to do something to help others," she recalls.
Then life threw her another sharp curve.
When she was three months along, her partner Roth Brownlaw died when a truck slammed into his car as he was pulling into their driveway.
Their daughter, Zarlee, was to be born without a father and a sister.
Cini and Roth were carriers of the spinal muscular atrophy gene. Zarlee was also born with the disease. She died on Christmas day in 2007, only 12 months old.
Within 2½ years, all three members of Cini's family were gone and she was alone. Nevertheless she refused to let tragedy taint the rest of her life. "I have very good coping mechanisms," she says.
For her, the inspiration was to encourage others who have lost children to genetic diseases like spinal muscular atrophy.
"I know my children would not want me sitting in a chair bawling my eyes out and especially my partner, he would kick me up the backside and go, 'Julie, you've got to get out there and do something.
"That's what I live with every day. My girls would want me to be happy, so I am."
Spinal muscular atrophy is a genetic disease characterised by the loss of motor neurons that leads to muscle wastage. It continues to be the biggest genetic killer of infants under the age of two.
The association continues to raise awareness and support parents with children who have the disease. It also advocates for genetic screening.
"You can actually prevent this disease by being screened, and if you do get picked up, you'll be counselled," Cini says.
"You will then get a choice...so that you don't have to go through what I went through.
"I don't want someone to lose their child because they didn't think about it. I just want to get it on people's minds."
To continue its work, the association will be raising money through Million Steps for SMA, a fun run and family day on March 24 at Jells Park.
This is the fourth year the event has been held and all the money will go towards keeping the association going and supporting families with essential medical equipment.
Cini encouraged Monash residents to come along.
"It's going to be an awesome day. We've got some AFL players coming down to do a footy clinic and we've got a barbecue by a Rotary club.
"There's also going to be a mini golf course.
"We hope people can come down and have a bit of a family morning out."
Million Steps for SMA is at 9am on Sunday, March 24, in the Oaks Picnic Area at Jells Park. There will be a barbecue, jumping castle and mini golf course. There will also be a visit from AFL players. Details: smaaustralia.org.au. Cost: $30 for the fun run (tax deductible). Entry: Free.