By CAM LUCADOU-WELLS
JULIE Cini has a gruelling job – to prepare mums watching their children die.
The chief executive and founder of the Hallam-based charity Spinal Muscular Atrophy Australia has been wise counsel for thousands of families torpedoed by SMA in the past decade.
Not many others empathise with the cruel twists of being an SMA parent or patient.
Children born with this rare inherited disease progressively lose motor neurons that are the means for crawling, walking, feeding, coughing, swallowing and breathing.
This month Ms Cini of Berwick launched a second edition of her self-published book Living Life Legacies.
It is an account of how she bounced back from a personal tragedy that many would find unspeakable.
Less than three years apart, Ms Cini’s two baby daughters Montanna and Zarlee succumbed to type-one SMA.
While pregnant with Zarlee, she lost her partner Ross Brownlaw in a road crash.
Ten years on, Ms Cini said she marks her loved ones’ birthdays and anniversaries. She holds brilliant memories but for the rest of the year, she just wants to make a difference.
The charity was founded soon after losing Montanna.
“So when I see (my daughters) again, I can say I did everything I could for fighting that disease.”
She doesn’t sugar-coat the bitterest of pills for any parent.
There’s a point when their child’s quality of life has so waned, they have to let their child die.
“Emotionally it’s really hard. I can look at a child and know they will be dead in six weeks.
“You’ve got to let them down so gently.”
Ms Cini tells new families there is hope and options. Diagnosis is earlier, and overseas research into treatments is promising.
There’s more effective treatment that allows kids with type-two SMA to live longer.
For those with the more severe type-one, there are emerging clinical injection trials.
“There’s a girl in Hallam who after her first round of treatment is doing quite well. She’s still alive at 18 months.
“To see that girl lift even just a paper cup and drink from the cup is amazing.”
But for many families, medical breakthroughs can’t happen soon enough.
In her latest book edition, Ms Cini outlines coping strategies.
Her main advice is that families have to do what they think is best for their child. Don’t blindly follow orthodoxy or others’ examples.
Readers – not just parents of SMA kids – regularly tell her that the book is inspirational.
Ms Cini’s national charity offers counselling, advice as well as the loan of 30 vital machines that induce coughing so SMA patients can expel infections from colds from their lungs.
These machines allow children to stay home or go on family holidays rather than fighting colds in hospital.
“That’s the thing I like about my job – seeing families and kids enjoying their life.”
There are about 130 families on the charity’s books, including three type-one families. Plus there are still bereaved families who are lent support.
Ms Cini suspects there a few type-one families, still in denial, who haven’t been in touch yet. It takes courage for them to make that call, she said.
Of her own triple-edged grief, Ms Cini said she learnt quickly that it wasn’t going to go away.
She chose to live with purpose, rather than a “blubbering mess” at home.
Ms Cini often asks bereaved parents what their late children would want them to do. They’d want mum and dad to be happy, she said.
“If I’m feeling bad, the best way to pick myself up is to give back.”
To donate or volunteer to Spinal Muscular Atrophy Australia, go to smaaustralia.org.au, its Facebook page or its office in Melverton Drive, Hallam.
Leaving Life Legacies is available at juliecini.com.au or from the SMA charity.
