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Legislative Assembly for the ACT: 2011 Week 8 Hansard (17 August) . . Page.. 3459..


Tamara wants everyone to know more about spinal muscular atrophy, often shortened to SMA, and wants to spread the message that one in 35 people carry the gene for the disease that is the No 1 genetic killer of infants under two.

This month is SMA Awareness Month and there are fund-raising and awareness campaigns running at the Canberra Hospital and through Brindabella Airlines.

Cafe Hoz at the hospital is giving away SMA-branded coffee cups with takeaway orders and has two donation boxes; the airline is promoting and fund-raising for the cause.

Tamara's own story starts with the birth of her daughter Summer Hayes at Canberra Hospital on June 27 last year.

The apparently normal and healthy baby was thought to be a slow developer.

Mum and daughter moved to Narooma. On March 25, life changed for Tamara. She thought she was being a neurotic new mother when she called a doctor about her wheezing baby. The child went to Moruya's hospital by ambulance with a high temperature and was soon rushed to Canberra Hospital.

"Thirteen days later, she died in my arms,"Tamara said.

"Her ashes are in a teddy bear and I still cuddle her to sleep every night."

She is full of praise for Canberra Hospital staff. Some even grieved at the child's funeral.

"They made an awful time a lot better."

Tamara met Julie Cini, a woman at the helm of the non-profit support organisation Spinal Muscular Atrophy Association of Australia, founded with her husband Ross Brownlaw. Cini lost two children to the disease.

Tamara is a volunteer for the association that offers emotional support, free medical equipment, a toy library, information, links to other affected families and more. She and her parents now run a Canberra branch of the organisation.

"SMA Australia won't stop until there's a cure because this cannot keep happening. It's so traumatic. It took Summer 30 hours to finally pass away once life support was turned off. I want people to be aware of this disease. I want the Government to fund research.

"My message [to families] is don't worry, help is out there.

"I couldn't let Summer's death be the end, because that would not respect her life."

And that is the story of Tamara Hayes about her daughter, Summer Hayes.

Management liability insurance

DR BOURKE (Ginninderra) (7.43): Recently I had the pleasure of launching, alongside Dr Chris Peters of the ACT Chamber of Commerce and Industry, a new


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