Carly Middleton was supposed to be enjoying her first weeks of newborn bliss in 2021. After years of trying to conceive through IVF, she had given birth to her gorgeous “miracle daughter”, Poppy. Instead, her and partner Tresne’s lives were turned upside down in an instant when Poppy was diagnosed with infantile acute lymphoblastic leukaemia, a cancer of the blood and bone marrow, at just 12 weeks old.
“It was the most devastating thing in the world,” Carly tells WHO. “There is no planning, things change and from that point, you just have to roll with the punches.”
The couple, who starred in Season 5 of My Kitchen Rules, which aired in 2014, were self-employed. Carly had planned to step back from their family business while taking partial maternity leave to do “bits and pieces” where she could before going back. However, that quickly changed when she was thrust into the role of a full-time unpaid carer while trying to deal with her stress and grief following the shock diagnosis.
Every day in Australia, over 2.65 million people provide care and support to relatives and friends living with a disability or chronic or life-limiting illness.
“When you have a sick child, it isn’t just the loss of income, there are incredibly expensive medications and medical equipment that you must have,” Carly reveals.
“There were times it was hard to keep our head above water. There was a moment when we had a rates bill come in and we just couldn’t pay it and a wonderful charity helped us.”
For 18 months, Poppy underwent numerous treatments, including chemotherapy, bone marrow transplants and essential blood transfusions.
“If people ever asked us if there was anything they could do to help, we always told them to donate blood,” she says. “The difference it makes to children with leukaemia in unbelievable.”
Poppy lost her brave battle in February 2023 at just 20 months of age.
Carly reveals the financial ramifications of their daughter’s illness is something that continues to affect the family today. And back when their lives were an endless cycle of hospital visits, they met many parents who had needed to take on the role of full-time carer for their gravely ill child for a decade or longer.
The average time that an unpaid carer is out of the workforce is 11.5 years. Women make up seven out of 10 unpaid carers, meaning they are disproportionately affected.
During this time, not only do they miss out on income and career progression opportunity, it can continue to affect them well into the future.
While some unpaid carers may be eligible to receive means-tested income support of a maximum of $1096.70 a fortnight, this does not include any form of superannuation. It has been estimated that carers may lose as much as $175,000 in superannuation by age 67.
Their future, which Carly admits many carers aren’t thinking about, looks bleak.
“While caring for Poppy, I was living day to day and only focusing on what I needed to do to keep her alive, keep her comfortable in the moment,” Carly says.
“Superannuation wouldn’t have crossed my mind and the stress of dealing with a loved one’s illness means it won’t for thousands of long-term carers either, until it is too late.”
The experience Carly and her family went through has prompted her to throw her support behind a campaign by Carers Australia and Are Media to have superannuation added to carers’ income support.
“It is such an important issue and it’s really time for change,” Carly says. “It breaks my heart to think of all of those incredible and kind families already dealing with such an emotional toll and struggling with such a heavy financial burden. How high does the cost of caring have to be?”
Today, Carly and Tresne are slowly putting their lives back together following the loss of Poppy. In August, they are expecting a baby boy.
“There is not a day that goes by that I don’t think about Poppy Grace and everything that she missed out on,” Carly says. “But while it is scary, we are feeling hopeful about the future.”
WHO is campaigning for the government to pay superannuation to carers to help them build a better financial future. Join us in urging Prime Minister Anthony Albanese, Treasurer Jim Chalmers, Minister for Social Services Amanda Rishworth MP, and Assistant Treasurer and Minister for Financial Services Stephen Jones MP to support our Cost of Caring campaign.
Your voice matters! For more information, visit costofcaring.com.au. To sign the Are Media/Carers Australia petition, visit change.org/costofcaring
