Perth girl dies from DIPG, a rare ‘incurable, inoperable’ brain tumor after emergency room doctors ‘dismissed’ her cancer symptom

EXCLUSIVE

A sporty 10-year-old girl ‘with a wicked sense of humour’ dies from a rare form of brain cancer after her symptoms were initially ‘dismissed’ by doctors.

Evie Whipps, from Bunbury, Western Australia, was taken to a hospital emergency room on February 6 after showing worrying eye problems.

An on-call doctor thought she had nystagmus – one of the most common forms of visual impairment in children – and sent her home.

But her condition quickly deteriorated and she was rushed to a hospital in Perth, where she underwent an MRI scan of her brain just over a week later on February 13.

The next day, Evie and her devastated parents were told that her symptoms were the result of an aggressive brainstem tumor known as Diffuse intrinsic pontine glioma (DIPG).

In August, Evie’s condition worsened further when her tumor grew into her cerebellum, the part of the brain that controls muscle control, balance, movement and vision.

DIPG children eventually lose the ability to speak, a stage Evie reached this week.

Evie’s mother, Pia Whipps, 36, spoke to Daily Mail Australia about the family’s life-changing journey since the tragic diagnosis.

“Every day we try to live in the moment with her as she shuts down emotionally and struggles with her own declining abilities,” Ms Whipps said.

This means that Evie, who loved netball, making art and wanting to learn the clarinet, is now ‘hitting walls and literally falling over’.

“Today, after a lot of questions from me, she told me she doesn’t speak much anymore because she can’t control her tongue very well,” Ms Whipps said.

“She has the most beautiful voice, and she’s the funniest kid with the wickedest sense of humor.

“But now all we can do is watch her fall silent as her amazing personality is stolen bit by bit by this intruder in her brain.”

Dad Joshua Whipps told Daily Mail Australia that 2023 has been “the worst year of our lives, even though it has brought us all closer together.”

He described his daughter as “the nicest, funniest, smartest girl you would ever meet in your entire life.”

“I can’t think of anyone who deserved this less than she did. She’s never complained about anything, never whined.’

Mrs Whipps had initially taken her daughter to A&E where they waited six hours before being sent home.

They were told that Evie’s symptoms had “resolved themselves,” but if they were still concerned they should “get an MRI.”

The family was told it could take eight weeks for an MRI to be performed.

After an MRI referral from the GP, Evie’s nose started bleeding and she started ‘bumping into things and tripping’.

So the next day, February 7, Pia drove her daughter 175km to Perth Children’s Hospital, where her condition was taken more seriously.

On February 14 Pia and Joshua received the ‘news that is every parent’s worst nightmare’: that Evie would have less than a year to live.

Ms Whipps said everything that has happened since Evie was diagnosed with DIPG has ‘blown us away’.

“We have had wonderful nurses and doctors, but we get a diagnosis that says there is no treatment, no cure, just go home and make memories,” Ms Whipps said.

‘How should I do that, just ‘let go’?

“How can I do that when I’ve spent my entire life as a parent caring for her, making sure she’s okay emotionally, mentally and physically, trying to prepare her to live as the best adult she can be ?’

Ms. Whipps said it feels like “everything we’ve been told doesn’t mean anything.”

“It’s very strange to watch your perfectly healthy child lose more and more of her functions every day, knowing that there is nothing I can do to help her other than be with her and love her,” she said.

After eight months of a heartbreaking detour in her life that Evie may never return from, she embarked on bucket list adventures organized by the Make-A-Wish Foundation.

Her first choice was “feeling rich for a few days.” The family moved into a Perth Ritz-Carlton suite for a few days and hotel staff decorated the room in a Halloween theme.

Evie is driven to high tea in a limousine.

Treatment for DIGP consists of steroids (which caused Evie’s face to swell) and radiation therapy.

On average, patients survive less than a year after their initial diagnosis. Currently, no chemotherapy drugs have proven effective in combating DIPGs.

But many parents in the tight-knit community of “DIPG kids” believe this can change, if only more money is put into research and clinical trials.

Ms Whipps has also become active in her efforts to make changes so that DIPG is better funded and treatments can finally begin in Australia, if not for Evie, then perhaps for some of the other 25 children who develop DIPGs each year .

Ms Whipps is angry that, according to estimates researched by the families of DIPG patients, only $950,000 has been spent on treatment in Australia since 2014.

The Australian DIPG community claims that leukemia has received $80 million in government funding over the same period.

Ms Whipps also wants to know why the family has been denied NDIS funding when Evie’s journey has left her disabled.

She also wonders why there aren’t better financial and mental health supports and programs for families dealing with the impending death of a child.

Evie will take part in a ‘last-ditch’ drug trial in Perth in December, using a synthesized derivative of the feverfew plant.

A family friend has one GoFundMe to help the Whipps as Joshua is unable to return to his job as a shutdown supervisor at an iron ore mine in WA’s Pilbara region.

Daily Mail Australia contacted WA Health, the Department of Health and the NDIS for comment.