After the loss of both her daughters and her husband, Julie Cini will be visiting Penrith next month to spread awareness about Spinal Muscular Atrophy (SMA), the topic of her new book Leaving Life Legacies.
The Melbournian and Founder of Spinal Muscular Atrophy Australia will make the trip up north in June to speak at Penrith business Basically Crystals about the disease.
Ms Cini’s first daughter, Montanna, passed away at just 10-months-old in 2005 after she was diagnosed with Type 1 SMA and her second daughter, Zarlee, passed away on Christmas Day in 2007 at 12-months-old from the same disease.
Her husband passed away before Zarlee was born from a car accident out the front of their property in 2006.
“The book is very much about my story and how other parents with children who have the same disease can use the coping strategies that I have used,” Ms Cini told the Weekender.
“I just know my daughters and husband would want me to be happy and that’s what I try to be everyday by using these strategies.”
SMA affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe and is the number one genetic cause of death for infants.
Although Ms Cini said some days are harder than others, she hopes she can spread the message about SMA and help families through it.
“One day, I hope my headstone reads ‘Julie made a difference in this world’ and that when I get to meet my children when that day comes, I’m able to tell them I did everything I could to help prevent this disease,” she said.
Ms Cini will be at Basically Crystals at Unit 1, 18 Abel Street, Jamisontown on Saturday, June 11, from 10am.
To learn more about Ms Cini’s charity, visit www.smaaustralia.org.au. To purchase a copy of her book Leaving Life Legacies, head to www.juliecini.com. au.