At 26 years old, two-time Survivor contestant and former AFLW star Moana Hope became the sole carer for her sister Lavinia, or Vinny, who lives with a rare neurological condition called Moebius syndrome.
And while Moana knew it would be a challenge, the now 32-year-old says there “isn’t anything” she wouldn’t do with, or for, her sister.
“Vinny is my best friend. Someone who has probably taught me as much as I’ve taught her,” Moana tells Yahoo Lifestyle.
“Her resilience, innocence and love is something admire. There really isn’t anything that I won’t do that doesn’t include Vinny. Sisters by blood, best friends by life adventures.”
Moana, who is an ambassador for Carers Victoria, says she was actually excited by the prospect of stepping up for her sister.
“To be honest I was so excited, I knew it was going to be a challenge but never did I doubt my ability to take care of her because of how much I love her,” she says.
On her wedding day to wife Isabella Carlstrom, the couple even presented Vinny with her own special ring as a symbol that they would always look after her.
And now that Moana and Isabella are on the verge of welcoming their first child together, she says there are definitely some things she has learned from being an unpaid carer to Vinny.
“Patience is probably the biggest,” she tells us. “When I’m teaching Vinny a life skill, like brushing teeth or getting dressed, it’s something that could take months or years for her to retain that information.
“And unconditional love. She always just loves no matter what.”
The coronavirus pandemic has brought with it some additional challenges, with lockdowns in Victoria being particularly difficult for Vinny.
“It’s been really hard on Vinny, the first lockdown we noticed she was getting super sad, wouldn’t come out of her room, didn’t want hang out with us,” Moana says.
“She didn’t understand why she couldn’t go to school or see our mum.
“So it was really hard on her and us to have to watch her go through it.”
But she hopes baby duties will be a welcome change come November.
“I think she is distracted with the baby coming and knowing she is going to have some big responsibilities,” she says.
It’s clear Moana would do anything for her sister. Last year for example, a day program that Vinny attended was shut down due to NDIS budget cuts - but incredibly, Moana came to the rescue, launching a brand new school for Vinny and her friends.
But Moana stresses it’s important for unpaid carers - particularly those that are younger themselves - to make sure they are also taken care of.
“Don’t forget to take care of yourself as well. That is why I am an advocate for Carers Victoria. To let unpaid Carers know that there is support out there,” she says.
“It’s ok to put you first sometimes. There is help out there, don’t be afraid to use it. And remember you are amazing!”
Carers Week (11-17 Oct) is a time to recognise the 2.65 million Australians who provide care and support to a family member or friend.