Marcie O’Brien underwent her first treatment, plaster from toe to hip, at just 23 hours old. Photo: Melissa O’Brien.
To see graceful Canberra teen Marcie O’Brien dancing, nobody could imagine the battle she’s endured.
Only this year, the 17-year-old was discharged from treatment for the birth defect that forced her in and out of casts almost all her life.
In utero, doctors found Marcie had Triple X syndrome resulting in low muscle tone. This in turn contributed to talipes, a condition more commonly known as “clubfoot” and characterised by feet that are twisted out of shape or position.
Parents Mel and John, who lived in Gunnedah NSW at the time, were advised to consider a termination.
“It was a pretty awful time,” John says. “Obviously, we chose not to go down that path.”
At less than a day old, Marcie underwent her first treatment.
This treatment for talipes was ever present in her earliest memories – and she hated it.
“You have to wear these casts for three to four weeks,” Marcie says. “Then it would come off, we’d wait a few months for me to grow, and my feet would start to twist again and I’d be back in for a new cast.”
For years it went like that – cast on, cast off, wait, grow, cast on…
When she was about 10, the family relocated to Canberra where staff at Canberra Hospital picked up Marcie’s treatment “seamlessly”.
Though the road to recovery has been paved by surgeries and dozens of cast changes, John says there has been plenty of hope and inspiration thanks to the impeccable care and support of the Canberra Hospital Foundation.
“I can’t think of any specific way in which the staff went above and beyond because above and beyond was just their way from the beginning,” he says.
Mel says Marcie’s treatments have been a juggle for two full-time working parents, but it’s been manageable with help from Canberra Hospital staff.
“John and I would take turns taking her to appointments, and they were always so accommodating. There were always distractions at appointments for her, which was a great way to break the monotony, because she was there so often,” she says.
“As Marcie grew older, they tried to time cast changes around things like holidays and school camps, so she wouldn’t miss out entirely.
“From the beginning we were told this would need to be a whole-of-family affair, because treating these kinds of conditions is a long road. It takes a village. For John, Marcie and I, along with Marcie’s little sister Louisa, reaching the finish line has been a joint effort, and the team at the hospital were no small part of that.”
Marcie recalls one particular staff member, Mel.
“She was awesome. She would always call me ‘champ’ and it felt so genuine. When I thought I was done with the treatments, and it turned out I actually needed more casts, she told me ‘You’ve got this’.”
Though Marcie’s treatments have concluded, the battle to maintain muscle tone and keep her joints supple is lifelong.
Dance has emerged as the answer.
“I tried lots of different sports and that helped, but always felt very tired after and my feet hated me,” Marcie says. “Dance is the only thing I can do as much as I want. When I am dancing, the talipes isn’t really a factor – it’s just me.”
Coming into the festive season, the Canberra Hospital Foundation (CHF) Christmas Appeal helps raise funds so the organisation can help support more stories like Marcie’s.
Donations go towards specialised medical equipment, crucial medical research, therapeutic patient programs and refurbishments to help make the hospital feel more like home.
Marcie hopes her story will help inspire others to give to the cause.
“I want to help people going through something like this – or worse. I want them to know people go through this, and they make it out,” she says.
“I want to be that person to say ‘You’ve got this’ and make them feel it’s true.
“Even though it seems never ending and it feels like you might be stuck forever, you can get there because people will help you along the way.”
To donate to the CHF Christmas Appeal visit the Canberra Hospital Foundation.
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