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Christine Farrugia headshot
Christine Farrugia headshot

“The great thing with A&O is I’ve always had flexibility.”

Christine Farrugia describes how she juggles caring for her young twins, one of whom has cerebral palsy, and a busy work life as a Legal PA in our Sydney office.

For Christine Farrugia, every September for the last few years has been a ‘STEPtember’.

She has completed the challenge to do 10,000 steps a day throughout the month as part of a campaign to raise awareness and funding for research into cerebral palsy.

Last year she raised an amazing AUD5,000, with generous support from, among others, many colleagues in A&O’s Sydney office, where for the last eleven and a half years she has worked as a legal PA in the banking group.

Preparing for this year’s ‘STEPtember’ had been a good deal more challenging, with Sydney returning to a strict lockdown amid fears of a surge in the Delta variant of the Coronavirus responsible for the Covid-19 pandemic.

She checked her phone to see how many steps she had done that day. “982 – absolutely appalling! Normally I’d be doing 4 to 5,000 a day,” she said with a warm laugh.

The challenge is very important to her. She and her husband, Daniel, have twin boys, Zac and Nate, aged five and a half. Three years ago Zac was diagnosed with cerebral palsy.

Shock of the diagnosis

She admits the diagnosis came as a surprise. Neither she nor Daniel knew anything about the condition and had never met anyone affected by it.

“Yes, getting the diagnosis was a real shock,” she says. “It’s a really hard thing to understand. I still don’t think I understand more than a fraction of it.”

She’s not alone. Cerebral palsy is one of the most common conditions in childhood, affecting, it is estimated, between 1 in 500 and 1 in 700 young people.

Yet what causes it remains little understood, and there are currently no cures or treatments to fix it.

What is known is that it is a neurological condition, usually occurring during pregnancy or in the very early months of a child’s life, which causes the signals sent from the brain to the muscles to misfire, directly affecting a person’s movement and posture for life.

Every case is very different, Christine explains. Indeed, cerebral palsy is an umbrella term covering a condition that can range from the very mild to the very extreme, where sufferers may be wheelchair-bound, unable to dress or feed themselves.

Zac has a very mild form of the condition. He “toe-walks”, struggling with the heel-toe gait and has difficulty with any task that involves balance.

Yet he runs, walks, joins in with games and dresses himself, meaning that he lives a full and mostly very independent life, helped by a lot of physio and other regular treatments. He and Nate have started in mainstream school and are part of the local soccer team.

Given that so little is known about cerebral palsy, even the doctors can be vague. “They don’t like to predict what his life might be like in future – we just don’t know,” she says.

Although his actual condition will not change or worsen, there will be side effects felt in other ways as he grows. For instance he will always struggle to walk, which might lead to ankle, knee or muscle-shortening issues that will likely require surgeries later on.

And, says Christine, the normal process of growing is just more challenging for him. Growth spurts that all kids go through can be extremely painful for Zac because his already-tight muscles become stretched even further as his bones and muscles are developing at different rates. Sometimes he wakes up crying because of the pain.

But he is a cheerful child. “He’s a cheeky monkey,” she says.

“We can manage quite well with his condition. When we were able to go to weekly physio sessions, before lockdown, we were seeing kids who were much more extreme. It brought home to us how lucky we are that Zac’s condition is quite mild.”

Of course there are worries, not least will he be accepted at school or will he be bullied. Thankfully Nate is there with him, standing up for his brother. “It’s good to know I have my own insider spy,” she says with a chuckle.

Juggling act

Life is a juggle, however. Since the boys were born she has returned to working gradually, building up to a four-day week, with the day off timed to coincide with Zac’s physio and other appointments.

“I aim to work as much as possible without compromising on what Zac needs. It’s a juggling act. You try to do the best you can, prioritising where you need to prioritise.”

She and Daniel always attend big hospital appointments for treatment but Daniel’s work as an electrician is full on, so most of the day-to-day tasks fall to her, helped by her parents and in-laws who all live nearby. For instance, the fitting of new custom-built ankle foot orthotics (AFO’s), supports that fit inside his shoes and extend up his calves, which he sometimes resents having to wear.

And the support from colleagues has been terrific. “The great thing with A&O is I’ve always had flexibility with my colleagues and bosses. They’ve always been very accommodating if I need time off. They understand when things crop up.”

She has really appreciated that support during her ‘STEPtember’ challenges. It’s acted as conversation starter. “Colleagues have always been very respectful. They are curious to know more and want to understand. It’s very nice to get that support.”

Christine exudes a natural energy and optimism. But there are inevitably moments of uncertainty with a condition that is so little understood.

“We have to make sure, as he grows up, that he doesn’t get dejected or downhearted not being able to do all the things his brother can do,” she says, adding that it is a constant learning curve.

“Sometimes you do feel you are fighting an unwinnable battle. Just when you settle into a rhythm something else gets thrown into the mix.”

“It’s a lot. But we just have to muddle our way through.”

Taking part in ‘STEPtember’ is part of that process. This year’s effort raised over AUD3,000.

“When you see kids affected worse than Zac it’s really difficult to ignore. You do what you can. That’s my little bit.”

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