Connie Johnson inspired the nation through her experience with cancer.
Since receiving her terminal diagnosis seven years ago, the mother-of-two dedicated herself to raising money for cancer research, alongside her brother, Logie award-winning actor Samuel Johnson.
Together they formed the ‘Love Your Sister’ charity, which has since raised more than $4 million.
At 11 she was diagnosed with a bone tumour in her leg and a decade later cancer was found in her womb.
Delivering a Ted Talk in 2014, Connie told the crowd how she beat both, thanks to early treatment.
“Me and cancer, well, we have a love hate relationship, I absolutely hate cancer, but unfortunately cancer loves me,” she said.
But this time, at 33, the cancer had spread to her spine, pelvis, lungs and liver.
“There is no cure, this time I would not be a survivor and my children will lose their mother,” she said.
But instead of retreating Connie embarked on the fight of her life.
At the last fundraiser she would attend — the Big Heart Project in Canberra this year — Connie spoke about what motivated her to keep going.
“I think about my children growing up and them experiencing in their lifetime cures, better treatments and a world where cancer doesn’t tear families apart the way it does now,” she said.
“That gives me hope and it also gives me peace that as I leave this world I feel like I have done everything that I could to build a more hopeful future.”
Love Your Sister was built on one wheel
Connie and her brother Sam hatched their first fundraising plan soon after her breast cancer diagnosis.
Sam had a profile through his career as an actor, so Connie issued her larrikin brother a dare — would he ride around the country on a unicycle?
“Together my brother, actor Samuel Johnson, and I cooked up a way to give me a long-lasting legacy, something that would be around long after I was gone. Something my kids could read about and say ‘Wow! That’s my mum!’,” Connie said in 2014.
So Sam hit the road, with the goal of raising $1 million and spreading breast cancer awareness.
“He built Love Your Sister with one wheel,” Connie said at a fundraising event this year.
She was at the finish line when he completed his marathon effort, with a cheque worth $1.5 million for the Garvan Institute of Medical Research.
“I’m thrilled to be here, before I didn’t know if I would make it or not so to be here is overwhelming,” she said in an interview.
“He is my brother and my hero.”
It was the beginning of the successful Love Your Sister charity.
Connie’s last hurrah
This year Sam and Connie planned their biggest event yet — to collect five-cent coins and make a giant silver heart.
Sadly, the Big Heart Project would end up being Connie’s last public project.
“This is the last hurrah. It wasn’t going to be but during the planning for the event I got worse news, and my health declined quite rapidly and I am no longer receiving active cancer treatment,” Connie said.
They put the call out for Australians to donate their smallest currency during a family fun day.
“Those pesky five cent pieces, none of us like them and we can turn that into serious coin for cancer research,” Sam said on the day.
“It’s sinking in today [that] this is the end of my fundraising life with Connie.
“We have spent years doing this together now, the adrenaline from this event has kept her going.”
The response surpassed what Sam or Connie could have ever imagined.
With more than $2 million raised Connie stepped back to spend time with her family.
“I am hoping that without the chemo in my system that I might have a bit of a boost for a little while, feel a little better before the cancer takes over and in that time I just want to be a mum,” she said.
A village and brother’s love carry on Connie’s legacy
Sam vowed to carry on his sister’s legacy.
At this year’s Logie Awards he announced he would not take another acting job until $10 million had been raised for Love Your Sister.
” I am going to kick cancer in the face-hole,” he said.
“I’ve committed to raising $10 million with the Love Your Sister community for a cure for cancer so that’s what we will do and until we hit that $10 million I won’t be acting.”
Just days before she died Connie was awarded a Medal for the Order of Australia and Sam said he could not be prouder of his sister.
“She didn’t want to make it about her but I haven’t seen her like that since she was a kid,” he said.
“She was like a kid in a lolly store with all the lollies in it, not just a few.
“It was a perfect rainbow in a dark storm.”
The Love Your Sister “villagers”, as Sam and Connie called them, watched Connie share her most challenging fight on social media.
She moved into a hospice in Canberra in July, posting personal updates as the cancer took over.
But always the fighter, Connie was still finding positives.
In one update in August she wrote:
“But today I realised that I still have my mind, there’s no cancer there. I still have my hands and my arms for hugging my children, I still have eyesight for seeing my friends, I still have my hearing for lovely conversations and music. I just feel so wonderfully happy! XX Connie”
Connie leaves behind a husband, two sons and a village determined to fight cancer in the Love Your Sister community.