Malua Bay's Edie and Sue find liberating support in south coast community

38-year-old Edie has been engaging in the community and getting the support she needs while Sue works part-time at Bunnings, thanks to Edie's NDIS funding.

Sue recently decided to self-manage Edie's NDIS plan to ensure they both have more freedom and flexibility.

"Before, I would go through a plan manager to find out what we could do and how much it would cost," Sue said, "there would always be delays and frustrations".

Edie was born in Sydney and began receiving therapy after she missed some developmental milestones.

As a teenager, she suffered seizures and was diagnosed with a rare syndrome when she was 21.

Mowat-Wilson syndrome is named after Dr David Mowat and Dr Meredith Wilson who identified children with similar facial abnormalities at Westmead Children's Hospital in the late 1990s.

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Although Edie is non-verbal, she shares an everlasting bond with her mum.

"Even though Edie is completely non-verbal, she will make happy sounds, like a chuckle," Sue said.

"There are other ways we communicate besides words...Edie will clap when she likes something. She always knows what's going on."

Sue said Edie is well-known in town from her frequent visits to the cinema, gym and pool.

"We'd forget our companion card at the cinemas and the staff would say 'don't you worry, we know you, Edie'. How beautiful is that."

Since turning to self-management, Sue has been able to work at Bunnings while Edie gets assistance from her support workers three days a week and spends two days a week in supported employment.

"It goes from a parent and disabled child sitting at home staring at one another, to both of us contributing to society.

"I always like to think that, together, there's nothing we cannot do."

Sue said she hopes Edie will keep living her best life in the community.

"One day, I'd like her to say, 'hey mum, I love you'. But I already know she does."