CONNIE Johnson, the sister of Australian actor Samuel Johnson, has died at age 40 after a long battle with cancer.
The mother of two young boys, she was awarded a Medal of the Order of Australia on Friday for her tireless work to raise millions of dollars for cancer research through her Love Your Sister charity.
She died in hospital surrounded by her family.
Connie was first diagnosed with cancer at the age of 11, undergoing three years of treatment before the disease returned with a tumour in her womb when she was 22.
Then in July 2010, on her eldest son Willoughby's fourth birthday, she was diagnosed with terminal breast cancer and told she may have only six to 12 months to live.
In April this year, aged 40, having undergone a double mastectomy, radiation, chemotherapy and countless medical procedures, she announced she was ceasing treatment.
"I guess my organs are just saying, 'No more. No more," she told The Canberra Times.
In her final interview with news.com.au, Connie thanked the Australian public for their outpouring of support.
"The world is our oyster," she said. "Thank you for the love, thank you for the support, thank you for the friendship. Live each day, notice the nice moments and now is awesome."
Asked whether she'd found any peace with the knowledge that she was dying she said she was "not there, there's just too much to do".
"I want to take the kids to the circus, we've never been to a circus," she said. "I want to take them to a hedge maze. I want to take Hammy (son Hamilton) to a motor bike show or a monster truck rally.
"Peace with dying? Nowhere near it."
Born in 1977, Connie was raised in Daylesford, Victoria with Samuel and their sister Hilde.
Their mother died by suicide when Connie was just a toddler, so all three children were raised by their father.
"My dad was a phenomenal man, he was more than capable of bringing up the kids on his own," Samuel said during an episode of Anh Do's Brush With Fame.
"I remember growing up with a dad who was authoritarian, but also effeminate ... so I had a two-in-one deal.
"I had a great childhood. I had heaps of fun. I don't remember hardship, I remember the value of not being able to get everything you want."
Connie and Sam were always incredibly close. He is known as 'Uncle Puddles' to his nephews and has spoken about the "important job" he has in helping to raise Connie's sons.
Connie's husband Mike Johnson keeps a low media profile and did not speak publicly about his wife's condition during her final months.
Connie moved into hospice care in July. In an emotional post shared on the Love Your Sister Facebook page her brother Samuel said his sister was "actively dying".
"Con's needed a lot of quiet time lately to try and comprehend the total headf***ery that 'actively dying' brings," he wrote.
Connie often spoke about the impact her illness had on her two young sons - Willoughby now 11 and Hamilton, who turns 10 on September 26.
"They were three and four when I was diagnosed and Sam and I were three and four when our mum died and we have no memories of our mum." she said in an interview in 2015.
"That was very hard thinking my children wouldn't remember me. Now I know they are old enough to have a memory of me, it might be weird little memories of me but at least they will have them for the rest of their lives."
In one of her final interviews, she shared the story of how one of her sons was happy to spend hours with her at the hospice, but the other just wanted to "check that I'm alive, check that I'm talking and leave. Quick hug. Get out".
"He is having anxiety about going to school becaue of what might happen while he is at school," she said.
RAISING MILLIONS FOR RESEARCH
Her illness and treatment never stopped her efforts to raise money for cancer research.
Her brother, Gold Logie award wining actor Samuel, established their charity Love Your Sister after her breast cancer diagnosis with the aim of raising $10 million for research.
He quit acting and rode a unicycle around Australia, talking to anyone who would listen to raise money for cancer.
But it was one of the last projects that Connie helped organise that was also their most successful.
The Big Heart Project encouraged people to donate five cent coins that were laid out in a giant love heart.
The inititaive raised more than $2.2 million, while the Love Your Sister campaign has rasied a total of $5.6 million.
Initially cranky about his sister's campaign for him to win television's top award, Johnson dedicated his win to his sister and used the platform to continue to raise funds.
"My sister is succumbing finally to the perils of cancer after a three decade long tussle and rather than rolling over, she's going out blazing with an attempted world record for the longest line of coins, absurdly," he said in an emotional speech.
"On behalf of my beautiful sister Connie, who I dedicate this award to, I would like to urge any family watching affected by cancer or not to join us in our quest to keep our families safe from the terrors of cancer.
The Johnson family is yet to release a public statement.
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