IT took Michelle Turner a year to accept that she was going to lose her daughter Flo.
The four-year-old Newcastle girl was diagnosed with the deadliest form of childhood cancer, Diffuse Intrinsic Pontine Glioma (DIPG) in March, 2023.
Flo sadly passed away in April this year.
"For someone to tell you that this is terminal, your child will die from this, you don't accept that, and I didn't accept that," Ms Turner said.
"It took me a year of researching every night, looking for survivors every night. That's how I would cope.
"Every single scientific paper I would read the first introduction was 'DIPG is deadly', it's the most deadly form of cancer you can get.
"The survival rates are zero, and that floored me every time I had to read that."
On Friday, Ms Turner, her husband Cameron and son Arlo pulled on their pyjamas and headed to New Lambton Public School to raise funds for DIPG research, so that hopefully one day no other family has to face the loss they're grappling with.
Children with the incurable disease usually survive only nine to 11 months after diagnosis.
Flo was smart, she was clever and a "force of nature".
"I think if you had to sum it up in one sentence, you'd say that she marched to the beat of her own drum," Mr Turner said.
"She really loved to do her own thing."
Flo could write her name well before she was supposed to, she would remember everyone else's and would remember to hand the right shoes back to the right person when guests came to the Turner house.
For nine months the family didn't see symptoms, a period of grace Ms Turner is incredibly grateful for.
"But deep down when she stopped writing her name, I knew that she was struggling," she said.
"I think when Flo was born, she sort of taught me that people are born kind and generous.
"I just thought, you know, it's something that you learn to be from your parents or those around you, but she was just born that way, she just had that nature."
In Flo's absence, the Turners want to live just like her.
They want to use their experience to raise awareness and funds for charity RUN DIPG, established by University of Newcastle professor Matt Dun.
"I keep saying this over and over again, but the way we choose to deal with our grief is to try and be as in the moment as possible," Ms Turner said.
"Our son lives in the moment, children live in the moment, they don't think about the past or the future.
"There just need to be way more awareness of it, and so we think that if we can raise as many funds as we can towards the fight, like other families are doing, then that's going to make a big difference."
On Friday, fundraisers were held at New Lambton Public School and Kotara Montessori Preschool, following an event at St Joseph's Primary School on Thursday where Ms Turner worked.
The events have raised more than $4000 for RUN DIPG.
New Lambton Public School principal Justine Abell said the school was happy to do everything they could to support the cause.
"All of this is just phenomenal," she said.
"That's the power of having school and community, to be able to actually support families in that time of need.
"Everyone's just come together, so it's great that we've had the opportunity to do this."
To make a donation click here, or visit the RUN DIPG website.
