In 2005 Ms Cini felt her world had stopped when her first daughter Montanna was diagnosed with spinal muscular atrophy type 1.

With no available resources on the degenerative disease - either from doctors or parental support networks - Ms Cini felt alone.

"When someone tells you to take your child home to love because there is nothing that can be done - that is just the most incomprehensible information you can hear as a parent."

SMA is a genetic motor neuron disease, present in adults and children. Depending on its severity, some children never get to walk, sit or stand unaided.

Type 1, also known as Werding-Hoffman disease, is the most severe and fatal form and is Australia's biggest genetic killer of children under two.

Symptoms in babies are not often present at birth but as the motor neurons in the spinal cord deteriorate, messages from brain nerve cells don't arrive to muscles in limbs, chest, throat, face and mouth.

After the death of Montanna in 2005, at only ten months old, Ms Cini and husband Ross wanted no parent to experience the same ordeal as them.

They started the Spinal Muscular Atrophy Association of Australia - Australia's only support organisation for sufferers of SMA and their families - based in Beaconsfield.

In 2006, while Ms Cini was 13 weeks pregnant with her second child, Ross was killed in a car accident. When second daughter Zarlee was born in December 2006, doctors again diagnosed type 1 SMA. Zarlee passed away on Christmas Day 2007, weeks after her first birthday.

Julie believes it is her family's legacy that drives her to raise awareness about SMA and fight for Government-funded genetic testing. "I choose to get up each day and to make a difference - not just for the kids with SMA but for all women ... to show them they are able to live after the loss of a child."

Julie says early genetic testing is also vital, much like that available for cystic fibrosis, and is petitioning the Federal Government to introduce such a test.

"I will work until I get it - I didn't lose my girls for nothing to happen and the amount of families losing their children every month just drives me."

SMA awareness month culminates with a charity gala dinner on Saturday, August 29, aimed at raising funds to buy equipment for treatment.

Details: 97689052 or www.smaaustralia.com