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This article was originally published by Nine Honey on 10.01.2024
“We’re a pretty active family, so Eadie is always having a crack at something,” mum Cea says with a laugh.
The whole family, including Eadie’s dad and 12-year-old sister, will be tackling the Krazy Kosci Klimb in February to fundraise for Cerebral Palsy Alliance (CPA). It played a huge role in Eadie’s childhood and without CPA, her diagnosis may have gone unnoticed for years.Â
Born full-term, Eadie’s delivery was “traumatic” and she suffered neonatal hypoxic-ischemic encephalopathy (HIE), a type of brain damage caused by lack of oxygen during birth.
She was rushed to the NICU seconds after she was born, where she remained for 10 days as hospital staff tried to cool her brain and limit the damage. Doctors warned Cea that HIE can cause lasting damage, but all of Eadie’s scans came back clear at her monthly checkups.
“All her scans were normal … I’m not quite sure why it wasn’t picked up earlier,” Cea says.
“It wasn’t until she wasn’t able to sit independently at around that eight-month mark that we realised something wasn’t quite right.”
That’s when she started to notice delays with Eadie’s gross motor skills, which she mentioned to medical professionals, but they urged her not to worry.
“Everyone just kept saying, ‘All kids develop at different times’, but I just kept comparing her to kids of the same age and I thought, ‘That doesn’t seem quite right,'” she says.
Cea noticed that Eadie didn’t seem to be hitting milestones at the same time as other kids her age and her developmental delays were only getting more pronounced.
Just after Eadie’s first birthday, they were referred to the Cerebral Palsy Alliance centre in Croudace Bay where a physical therapist said Eadie may have cerebral palsy. A few months later, she received an official diagnosis. Eadie’s parents had no idea what to think.Â
Cerebral palsy, which is an umbrella term for a group of disorders affecting a person’s ability to move, is the most common physical disability diagnosed in childhood.
It can affect muscle control, coordination and tone, reflex, posture and balance, and people with cerebral palsy may also have intellectual, speech, and learning delays.
More than 34,000 Australians live with the incurable disorder and one in 700 Aussie babies are diagnosed, but Eadie’s parents knew next to nothing about it.
“We didn’t have any idea what to expect really, we just took it one day at a time,” she says.
“You just get on with it. You can’t change the outcome. You can’t change what has happened in the past. All you can do is try to provide the best opportunities [for Eadie] going forward.”
She and her husband devoted the next few years to setting Eadie up for the best future possible with specialist early intervention therapy.
The NDIS was still in its early stages, so CPA provided free support until the family could get disability funding “sorted out”.
Fortunately, Cea and her husband are both shift workers, so they were able to work around Eadie’s many appointments. They also had help from relatives. With regular physiotherapy and occupational therapy, Eadie learned to crawl, stand and walk by herself and every little win felt huge for the family.
“When she was younger, she was learning to crawl, or walk, or climb up stairs. Then the goals got bigger as she got older,” Cea says.
“Like her speech was a bit delayed, so she saw the speech pathologist [at CPA]. That must have worked, because now we can’t shut her up!”
Now 10, Eadie is happy to talk about her disability and enjoys a pretty normal childhood, bossing her sister around and playing sports. She can’t always keep up with her friends who are living without disabilities, but she takes it in her stride.
“I have explained to her that her friends can’t always wait for her, sometimes they just want to run off and play and you’ll just have to catch up,” Cea says.
But there are plenty of ways Eadie can excel, like with the upcoming Krazy Kosci Klimb.
She and 14 other kids living with disabilities will tackle the 18km climb on February 10 with their families and support teams to raise money and awareness for Cerebral Palsy Alliance.
Last year, more than $520,000 was raised for kids with cerebral palsy, going towards support services and vital research.
“I’m very big on the research aspect of things, especially if we can find something new and different for the kids,” Cea says, “And it’d be great that more people knew about CPA.”Â
The 34,000 Aussies living with cerebral palsy deserve support to live full and independent lives, and CPA helps provide that for kids like Eadie.
“At some point, she will want to live independently and have a job,” Cea says.
“That’s the end goal with any kid, whether they’ve got a disability or not. You want them to be able to get out in society, look after themselves and contribute positively.”Â
The climb may be tough on Eadie, but with breaks and a bit of help, Cea hopes to see her at the top of the mountain on February 10.
The Krazy Kosci Klimb aims to raise $450,000 for Cerebral Palsy Alliance’s Accessible Gym and Sports Program this year. To show your support, click the button below.Â
