CHARLEE Sheahan has been a genuine, death-defying miracle since the day she was born 22 years ago.
But the little girl, who was beset by developmental issues from the get-go, had one thing in spades – she was a fighter.
Today the high school graduate, who has cerebral palsy, epilepsy and autism, is fighting hard to take the next step in her remarkable story – living independently.
Her mother Elizabeth says two things have been fundamental in that progress – the NDIS and the family’s decision to move north to the Murray River and set up home in Koraleigh.
But it has been a long and demanding road for Elizabeth, her husband Michael and her two older siblings April and Ryan.
“When Charlee’s epilepsy was bad it was actually horrendous,” Elizabeth said.
“At her worst we might be changing her and her bed linen seven or eight times a night, night after night.
“Going into her teen years her epilepsy escalated and we went through these days and nights for almost 10 years before the grand mal started to taper off.
“Before NDIS it was basically just the five of us, with one of us with her all the time.
“Now Charlee works with three NDIS workers each week and her progress has been remarkable.
“For the past two years she has been opening up, she will engage with others and happily communicate – before that she would spend about 90 per cent of her time with no communication and definitely no bonding with anyone new, anyone she didn’t really know well.”
Charlee’s journey to independence became a gradual weaning from almost total reliance on immediate family to explanations about who the support workers are, and why they are coming.
Elizabeth said the support workers had been incredibly patient and empowering and Charlee now participated with Echuca Discoveries, which has been one of the biggest things in her daughter’s life.
“It has a Swan Hill branch now and it brings together other disabled people in a like-minded community, and it has done wonders for Charlee,” she said.
“The process has brought her out of her shell. She has even got involved in the Tri State Games at her own request.”
The Tri State Games involves SA, Victoria and NSW and are an annual weeklong sporting event for people with disabilities.
Charlee pipes in “and I’m a tri state captain” from the background, clearly proud of the achievement.
Elizabeth said the changes in Charlee had been amazing.
“We have come such a long way in the past 18 months. We don’t have to prep Charlee for everything coming up, she no longer needs six weeks’ notice, she can handle different things with a couple of hours’ warning.
“When Charlee is with her support workers I no longer have to be there, I am able to go and do something else.
“It’s a great peace of mind to know Charlee is happy and with someone I trust.”
