One child every is born with cerebral palsy (CP) every 15 hours in Australia. A lifelong condition, cerebral palsy requires intense intervention which, of course, costs money. A lot of money.
The average cost to support a child with cerebral palsy is half the annual Australian salary, which puts a huge strain on the families impacted by the diagnosis – families like those of NSW Central Coast one-year-old, Joey, who were told that all indications showed Joey was at a high risk of developing moderate to severe cerebral palsy following his traumatic birth.
But the power of early intervention thanks to the dedicated team at The Cerebral Palsy Alliance (CPA) has changed the course of tJoey’s life. With an intense schedule of therapies, little Joey’s cerebral palsy will likely be mild.
What is cerebral palsy?
As described by the CPA, “Cerebral palsy is a physical disability that affects movement and posture. It is a permanent life-long condition, but generally does not worsen over time.
“It is due to damage to the developing brain either during pregnancy or shortly after birth. Cerebral means ‘of the brain’ and palsy refers to ‘a lack of muscle control’. It’s an umbrella term that refers to a group of disorders affecting a person’s ability to move.
“It affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.
There are around 34,000 people living with cerebral palsy in Australia – that’s 1 in 500 babies diagnosed with CP.”
Joseph Cooper has been attending Cerebral Palsy Alliance since August 2017 following his traumatic birth, seizures and abnormal brain MRI.
Danielle Galla is little Joey’s mum, and for her, the CPA’s dedication to her family has been a lifechanger.
“Joey suffered a hypoxic brain injury at birth, basically he was deprived of oxygen,” she explains. “We were initially rushed to the special care nursery at our local hospital, before being emergency transferred to John Hunter where Joey spent two weeks in the NICU.”
For Daniella and her partner, Matthew Cooper that difficult time was made more bearable thanks to the dedicated medical team at John Hunter, and the introduction to the CPA.
“Joey was born in mid-July and by the time we were home with him in August the CPA had sent a physio to us, and she has been with us ever since,” says Daniella. “I can not thank her enough for her time and patience, she’s been so supportive of our family and has guided us beautifully through this time.”
The CPA uses funds raised through their annual Steptember initiative to provide the services and support programs that are not covered by the National Disability Insurance Scheme to ease the pressure on families.
Steptember is a team-based 28-day fundraiser, which challenges team members to take the equivalent of 10,000 steps a day. The funds raised enable the CPA to provide scholarships to children for intensive therapy programs, essential equipment to help develop mobility and cognitive skills and vital early intervention for babies who are at risk of cerebral palsy.
Lucy Jacka from Steptember says, “Early diagnosis is imperative to get a child on the right path and thanks to funds raised through Steptember, the CPA has been able to help offer support and therapy to Joseph and his family.
Little Joey’s case is not the standard though. For most born with cerebral palsy a diagnosis does come until around 18 months to two years of age. Because cerebral palsy’s symptoms present on a spectrum from mild to moderate and severe, diagnosis is sometimes not made until those children miss milestones.
“That’s a big window of opportunity that is lost to those families,” says Lucy.
“We’re so lucky to have him, he brings us so much joy,” Little Joey with mum Daniella Galla, dad Matthew Cooper and big sister Evie.
Daniella found out about Steptember last year just after coming home from hospital with Joey. “For us the timing was perfect, getting involved with Steptember was a really great way for us to let our family and friends know about Joey, and create some awareness about what cerebral palsy is.”
During last year’s event Daniella and Matt’s friends and family rallied together in a team called Jog4Joey and raised over $28,000.
“This year we are doing it gain and hope to raise $30,000,” says Daniella. “We have been incredibly blessed to have the opportunity to engage with the CPA so early, so if we can help more families to get the great the great results that we have it will all be worth it.”
“Many people with cerebral palsy and their families require financial, physical and emotional support across a lifetime and some are amongst the most vulnerable in our community,’ says Lucy.
“Fundraising helps ease the pressure on families and individuals by giving them access to support and services that may not otherwise be available to them.”
Australians are encouraged to take part in Steptember and step-up to the challenge to raise the necessary funds to make life just a little easier for the 40,000 Australians living with cerebral palsy. To register for the challenge and make a small step make a big change, visit www.steptember.org.au.
