When Kathie Potts ascended to the stage to become Lifeline Canberra’s 2022 Woman of Spirit, her first thought went to her late daughter, Annabelle.

“I just got this image of her when they said that I won. I suppose I hoped she was watching and that she was proud of me.”

It’s been almost four years since Canberra lost five-year-old Annabelle Potts to an aggressive brain tumour by the name of Diffuse Intrinsic Pontine Glioma (DIPG).

It was the battle that propelled the viral Lemon Face Challenge, inspired two government grants for DIPG, and moved the hearts of the Canberra community and the nation.

On the day of Annabelle’s death, following countless calls and letters to the Department of Health, Kathie received a letter from then-Minister for Health, Greg Hunt, informing her that the grants had been approved.

#LoveForAnnabelle was the mantra of the Lemon Face Challenge, in which tens of thousands of Aussies, sports stars and even the Wiggles, participated.

But after the challenge, the movement, the wins, and disproportionate loss, those who loved Annabelle the most are left standing when the dust settles. 

“After you’ve lost a child, you’ll never be completely whole again,” says Kathie. “You’ll find happiness in the days and the moments, and I find so much joy from my other children, William, Juliette, and Vivianna.

“It’s extremely difficult seeing her little brother miss her, and her little sisters want to know her, and they never will.

“Also, seeing that children are still being diagnosed to this day, and are still being told what we were told, ‘Go home and make memories, there is nothing we can do.’

“A lot of people still don’t know that brain cancer kills more children in Australia than any other disease, and that it doesn’t get a lot of funding from the government.”

Kathie never thought she would continue her advocacy work for children with brain cancer once Annabelle was gone.

“We were trying to raise money for our daughter’s treatment, though our plan was always to raise awareness to get a treatment back home for children with this disease.

“I always thought I was just fighting for Annabelle.

“But then she passed away, and I felt this need inside me to do more,” says Kathie.

“I do get ‘you need to move on’ from a few people. Not everyone is supportive of what I’m doing. But this is my way of spending time with her now.”

Kathie says this is also her way of giving back to the Canberra community that rallied around her during the most difficult period of her life.

Many may remember Mix 106.3 recruiting tradies to build a castle playhouse for Annabelle in just one week while the family were in Sydney for her radiation treatment.

Renee Bogatko, a journalist who found out about Annabelle in the early days of her diagnosis and “took her story Australia-wide”, nominated Kathie for Lifeline Canberra’s 2022 Woman of Spirit, after the two kept in touch over the years.

Kathie found out about the nomination just two weeks before the awards ceremony.

“To be honest, I did feel a little bit of guilt at first. Like so many of the women who are nominated, we don’t do this for recognition. We do it because it’s something we feel we need to do.”

Her simple equation continues to drive her efforts to change the outcomes around childhood brain cancer: “Awareness = Funding = Research = Treatment”.

“I just hope that one day, families can be told ‘Your [child] does have a dangerous brain cancer, but we can treat it’.”

Looking back, Kathie describes the national support they received – every donation, every lemon smile – has been entirely surreal.

“I can’t believe that was my life, but it makes me so proud of Annabelle, she was the face of it all. I was just a mum trying to save her daughter.

“She was the cheekiest girl with the most beautiful personality.”

‘I won’t say you gained your angel wings, as you already had them on earth,’ Kathie wrote on the Love for Annabelle Facebook page on the morning of her daughter’s passing.

“Annabelle was such a selfless child. At two years old, when her baby brother was born, she would try to help me change his nappies.”

In her final days, Annabelle hoped to help “all the kids with lumps in their heads”.

“She lived to help people. Being my first child, I didn’t realise how unique that was, I just thought all children were beautiful and well-behaved and selfless,” says Kathie.

“I feel this need to connect with her by continuing this work.”

In Australia, about 100 children under the age of 15 are diagnosed with a brain tumour each year, leaving hundreds of parents in a tragic situation.

To those families, Kathie says to hold on to hope during, and even after.

“That’s one of the things that keeps me going: the hope that she’s watching me, she’s proud of me, and that I’ll see her again one day.”

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