Anna Ortega, from the US, has been diagnosed with an aggressive cancerous tumour called a DIPG on her brain stem.
The medication available is still at trial stage, so it is not covered by the family’s medical insurance. They have shared a video of Anna talking about her life as part of their fundraising efforts.
“Me and my sister Bella, we wanted to open up a bakery,” she said. “And I want to teach piano lessons, and also want to be a mum.”
Anna then shares through tears that ever since she was little, she’d pray that she’d get to live until she was older and could start a family.
DIPG (Diffuse Intrinsic Pontine Glioma) is the second most common type of primary, high grade brain tumour in children, according to The Brain Tumour Charity. Primary brain tumours are those which start in the brain rather than having spread there from another part of the body.
“The cause of brain tumours, including DIPG, is not yet known,” the charity explains.
“This can be one of the most difficult things to accept as a parent as it can leave you feeling helpless. Brain tumours are nobody’s fault.”
If the tumour can’t be removed, treatment options for children are limited, so the charity recommends parents consider clinical trials their child could join.
Anna’s parents Ted and Mindi, first had suspicions their daughter was not well on Friday 24 March.
Anna had been playing football, but she ran over to Mindi and told her she needed to see an eye doctor because her sight was blurry.
On Monday 27 March, Anna said she didn’t feel well and complained of double vision, when Mindi picked her up from her school she noticed her eye looked like it wasn’t fully able to focus, so she took her to hospital where she had a CT scan and MRI.
Doctors found two DIPG tumours deep within Anna’s brain. They were able to operate to remove one, but the other, on her brain stem, was inoperable.
“One of the neurosurgeons really made us aware that there was no survival rate for what she had,” said Mindi.
“When Anna got diagnosed with cancer I had no idea the world we would be propelled into.
“I had no idea that her cancer was rare. I did know that there was no cure but my mother heart would not let me believe she would not be cured.
“So we are fighting.”
Ted and Mindi are crowdfunding on GoFundMe to cover the cost of innovative treatment for their daughter, which they have to pay for upfront.
So far they have raised $117,000 of their $200,000 goal and Anna is currently taking five medications, which her body is currently reacting well to.
“She is set to get her next MRI on 11 May and then we will go from there,” Minid explains.
“Hopefully things will look good and we will be able to go home after to continue treatment.
“They are hoping to have the tumour shrunk by at least 30%. If it is-we can go home and carry on with the medications the way we are currently taking them.”