How Pat Jonas’ ARCAN foundation is making a difference for kids born with chromosome abnormalities

IT TOOK the family of Georgia Rose Jonas several months after her birth to find out she was the only one in the world born with a very rare chromosome abnormality.

Pride of Australia nominee Pat Jonas with her children Georgia and Ethan. Pictures: Peter Kelly

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IT TOOK the family of Georgia Rose Jonas several months after her birth to find out she was the only one in the world born with a very rare chromosome abnormality.

In and out of hospital since she was born, Georgia is now 11 and thanks to her, Australia’s first support network was formed to help families going through the same terrifying problems.

Her mother Patricia Jonas said the worst thing about Georgia’s very rare condition was the lack of knowledge or support to help them.

Pat Jonas co-founded the Australian Rare Chromosome Awareness Network.

Mrs Jonas and three other mothers who had children with similar chromosome mutations, then began the Australian Rare Chromosome Awareness Network (ARCAN) to address this lack of information.

Lauren Huxley, who survived a brutal attack in her Hills home 10 years ago, is the ambassador for ARCAN.

Mrs Jonas said thanks to the network, they are able to help other families going through the same difficulties.

The Ponds resident is the president of the pioneering ARCAN and is a Pride of Australia nomination.

Pat Jonas with Georgia and Ethan.

“Because Georgia’s condition was so unique, there was no medical advice and help and that’s why in 2010 the five of us decided to start this network,” Mrs Jonas said.

“We now have more than 880 members and provide them with information packs thanks to fundraising.

“When you are having a child you are so excited and you don’t expect to have a battle and give birth to a child with chromosome abnormality.

“This is not inherited and our second child, Ethan, is the best little brother ever because he keeps her motivated and is very compassionate.

“Our family does not qualify for any funding from the government because Georgia was not diagnosed for autism until she was after seven years.

“It’s hard but we have to keep going and there are others worse off than us.”

Mrs Jonas said she wants all geneticists in Australia to know about ARCAN and refer patients to them so families know they don’t have to travel this path alone.

■ To help or learn more, visit: arcan.org.au/about-us/

■ You can nominate someone who has inspired you through their dedication, initiative, courage and acts of charity. They can be a neighbour, friend, teammate, colleague or family member. For more information and to nominate somebody visit: prideofaustralia.com.au