Julie Cini, with daughter Zarlee, is raising awareness about Spinal Muscular Atrophy.
By Callan Date
A BERWICK mother has detailed a tragic two years, including her husband’s and child’s death and the current battle she faces with her baby daughter.
Julie Cini said she decided to tell her story to raise awareness about Spinal Muscular Atrophy (SMA) – a rare genetic disease which claimed the life of her daughter Montanna at just 10 months.
Ms Cini said she was also resigned to the fact that she would lose her six-month old daughter Zarlee to the disease within the next few years.
“There is nothing they can do. There is no cure at all for SMA,” Ms Cini said.
“It is the number one genetic killer of kids under two and nobody really knows about it.”
Ms Cini moved to Berwick in April for a fresh start after her husband Ross Brownlaw was killed in a car crash in 2005.
She said SMA caused the muscles to dramatically weaken to the point where the sufferer could not cough or swallow effectively.
“Zarlee doesn’t really know what is happening,” Ms Cini said.
“She is okay at the moment and is not in any pain. But there is nothing they can do for her.”
Ms Cini founded the Spinal Muscular Atrophy Association of Australia (SMAAA) to increase awareness of the disease.
“We are having a fundraiser on 4 August and I have written letters to a lot of local businesses for support,” she said.
“They have been fantastic and have offered auction items to raise money for the association.
“But any more help we can get would be great.”
The annual SMAAA Dinner and Show Night will be held at Mulgrave Country Club on 4 August.
For more information or to help the SMAAA cause, contact Julie Cini on 8786 7521 or visit www.smaaustralia.com.
