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PARENTS OF TERMINALLY ILL TODDLER SHARE THEIR STORY

Hearts broke and tears flowed across Canberra this morning as the parents of a terminally ill 3 year old girl shared their story.

Kathie and Adam, the mum and dad of Annabelle Potts, spoke to Kristen and Rod about how their lives were turned upside down when their little girl was diagnosed with a highly aggressive brain tumour in December.

They saw a GP in November after Annabelle experienced dizzy spells and slurred speech.

The blood tests came back fine.

Then, when the family were celebrating Christmas at Kathie’s mum’s house, Adam noticed Annabelle’s walking was different.

Knowing something wasn’t right, Annabelle’s parents saw a different GP.

They were told to go straight to Canberra Hospital, where Annabelle and her mum stayed overnight, ahead of an MRI in the morning.

“Then we were called into a room with a social worker and we knew it was bad, we knew it was bad,” Kathie said.

Shortly after, a helicopter flew them straight to Sydney.

“The surgeon pulled us into a room within half an hour and told us what it was and told us that she basically had a month to live.”

Annabelle was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a highly aggressive and difficult to treat brain tumour, found at the base of the brain.

Since then, it’s been test after test, doctor’s appointments, scans and travelling to and from Sydney.

It didn’t take long for Annabelle to work out something was wrong.

“About 2 weeks ago Adam and I sat down and we said to her there’s something in her head and she just laughed and said of course mummy that’s my brain,” Kathie said.

“Then we explained that was something was going on and the magical radiation can help her to get better.”

She’s currently undergoing radiation therapy in Sydney and her family’s looking at clinical trials overseas, after neurosurgeon Dr Charlie Teo told them it was too risky to operate.

 “We just have to think that we are going to get into a critical trial and we are going to keep her alive long enough to find a cure,” Kathie said.

“As long as she’s not suffering we just have to do whatever we can.”

Annabelle’s mum Kathie also described the emotional toll this has taken on her family.

“Every day for both of us is just a huge rollercoaster, one minute we’re feeling good, one minute we’re feeling fine, then the next minute can be just horrible,” she said.

“Sometimes I find it even harder on the days when she’s back to her normal self, just thinking how long have I got her for, why is someone going to take my daughter away?”

Annabelle’s family has been overwhelmed by the outpouring of support from the Canberra community.

A Go Fund Me page has already raised nearly $80,000.

“The support from the Canberra community and anyone who’s written on the Go Fund Me page, when I need some hope, I just read the messages on that page,” Kathie said.

This particular message touched their hearts in a big way.

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“That just made me cry because that is exactly what Annabelle would do.”

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