Amelia's story

First published on 25th February, 2019 by Lisa Wachsmuth

She can't tell him what's wrong due to a rare and incurable neurological disorder, but she finds comfort in his arms.

Amelia, 15, is one of 200 girls in Australia diagnosed with Rett syndrome, a genetic condition that usually takes hold between six and 18 months of age.

Sufferers then cease to acquire new skills and gradually lose previously acquired abilities, such as conscious control of the hands and the ability to vocalise most sounds or words.

"In Amelia's case we didn't notice anything until she was around 12 months old," Mr Wilkinson said.

"She's a twin, and while her brother Lachlan developed normally, she wasn't walking or talking or achieving other milestones for her age.

"She'd been crawling but that eventually stopped. Then at five years old she received the diagnosis."

There's no cure for Rett syndrome, just treatment for the symptoms.

Mr Wilkinson and Amelia's mother Belinda are thankful for the support of family and friends. Grateful too for the wonderful job the teachers do at Para Meadows School in North Wollongong.

They don't like to ask for help, but KidzWish has stepped in to assist in their time of need - with proceeds from the charity's annual bowls day to contribute to a new car to transport Amelia to school and elsewhere.

"Amelia is wheelchair bound and we need a car that can be converted for proper access," Mr Wilkinson said.

"The NDIS will help with the conversion, but not the car - and the car we have is very old and we're worried it won't last much longer.

"Without the transport our family wouldn't be able to function, and get Amelia to the places she needs to go."

Mr Wilkinson said despite her challenges, Amelia was a happy girl. "She has a funny sense of humour, she loves to laugh and loves a cuddle."

He said he was humbled by the support from KidzWish.

A spokesman for the children's charity, Karouna Micheal, said 50 per cent of proceeds from the bowls day on Friday would contribute to the new vehicle for Amelia's family. The other 50 per cent would help fund the charity's programs.

"Kids are the reason we do what we do at KidzWish and why our community of fundraisers and supporters are so passionate about helping out," Mr Micheal said.

“KidzWish will do our bit to make sure Amelia gets the help she deserves. If your business would love to make a difference please register a team of four players before next Friday."

— Lisa Wachsmuth

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