A sporty 10-year-old girl ‘with a wicked sense of humour’ is dying from a rare type 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 displaying worrying eye problems.
An on-duty doctor believed she had nystagmus – one of the most common form of visual impairments among children – and sent her home.
But her condition spiralled rapidly and she was rushed to a hospital in Perth where she underwent an MRI scan on her brain more than a week later on February 13.
The next day Evie and her devastated parents were told her symptoms were the result of an aggressive brain stem tumour known as Diffuse Intrinsic Pontine Glioma (DIPG).
A sporty 10-year-old girl ‘with a wicked sense of humour’ is dying from a rare type of brain cancer after her symptoms were initially ‘dismissed’ in emergency
Evie Whipps was told she had she had nystagmus, a condition in which the eyes move involuntarily during a visit to emergency. An MRI a week later revealed the full tragic story
Evie’s loving parents Joshua and Pia have barely left her side since the family received its life-changing news in February
Evie was a sporty kid but has been unable to take part since becoming ill. The swelling in her face from the steroids she must take was obvious as she was pictured sipping a juice during her Make-A-Wish adventure at Perth’s Ritz-Carlton
In August, Evie’s condition worsened further when her tumour grew into her cerebellum, the part of the brain which controls muscle control, balance, movement and vision.
DIPG kids eventually lose the ability to talk, a stage Evie reached this week.
WHAT IS DIPG?
Diffuse Intrinsic Pontine Glioma (DIPG) is an aggressive and fatal brain stem tumour.
DIPG tumours are fast-growing and inoperable because the cancer cells are scattered like ‘peppercorns’ through the area of the brain responsible for breathing, sleeping, bladder control and balance.
Eventually the nerves and muscles used for seeing, hearing, walking, talking, and eating are also affected.
As a DIPG grows, it puts pressure on the nerves and brain structures causing decline in all these functions.
Average life expectancy after diagnosis is around one year and around 10 per cent live for more than two years.
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 while she shuts down emotionally and struggles to cope with her own diminishing capacity,’ Ms Whipps said.
That’s meant Evie, who loved playing netball, making art and wanted to learn the clarinet, is now ‘bumping into walls and literally tipping over’.
‘Today, after much probing 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 is the funniest kid with the most wicked sense of humour.
‘But now all we can do is watch her go quiet as her amazing personality is stolen, bit by bit, by this invader in her brain.’
Dad Joshua Whipps told Daily Mail Australia that 2023 has been ‘the worst year of our lives, even though its brought us all closer together’.
He described his daughter as ‘the kindest, funniest, brightest girl you would have ever met in your entire life’.
‘I can’t think of any human that deserved this less than her, she has never complained about anything, never whinged once.’
Ms Whipps had initially taken her daughter to emergency where they waited for six hours before they were sent home.
They were told that Evie’s symptoms ‘had resolved themselves’, but if they were still worried to ‘go and get an MRI’.
The family was told it could take eight weeks to get an MRI.
After getting an MRI referral from the family doctor, Evie’s nose began to bleed and she started ‘bumping into things and tripping over’.
So Pia drove her daughter 175km to the Perth Children’s Hospital the next day, February 7, where her condition was taken more seriously.
On February 14 Pia and Joshua got the ‘news that is every parent’s worst nightmare’: that Evie could have less than a year to live.
So Pia drove her daughter 175km to the Perth Children’s Hospital the next day, February 7, where her condition was taken more seriously
DIPG patients eventually lose the abilty to speak. Several heartbreaking photos and videos show DIPG kids overseas writing the words ‘help me’ to their parents (pictured above_
Evie’s scarring after brain surgery this year
Ms Whipps said everything that has happened since Evie was diagnosed with a DIPG ‘has blown us away’.
‘We have had beautiful 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 am I supposed to do that, to just “let go”?
‘How do I do that when my whole life as a parent has been caring for her, making sure she’s ok emotionally, mentally, physically and trying to prepare her for life as the best adult she can be?’
Ms Whipps said it feels like ‘everything we have been told to do means nothing’.
‘It’s a really weird thing to watch your perfectly healthy child just lose more and more of her functions every day, knowing there’s nothing I can do to help her, other than be with her and love her,’ she said.
Eight months into a heartbreaking life detour that Evie likely won’t return from, she began bucket-list adventures organised by the Make-A-Wish Foundation
Her first choice was to ‘feel 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 will be driven to a high tea in a Limousine.
Treatment for DIGP consists of steroids (which had made Evie’s face swell) and radiation therapy.
Evie Whipps, 10, from Bunbury, Western Australia, was diagnosed with an inoperable brain tumour, a Diffuse Intrinsic Pontine Glioma (DIPG) on Valentines Day this year
On average patients survive under a year from their initial diagnosis. Currently no chemotherapy drugs have proved effective in fighting DIPGs
On average patients survive under a year from their initial diagnosis. Currently no chemotherapy drugs have proved effective in fighting DIPGs.
But many parents in the tight-knit community of ‘DIPG kids’ believe this can change, if only more funding is put into research and clinical trials.
Ms Whipps has also become active in trying to force through change so that DIPG is better funded and treatments in Australia can finally start, if not for Evie, then perhaps for some of the other 25 children who develop DIPGs every year.
Ms Whipps is angry that, according to estimates researched by the families of DIPG sufferers, only $950,000 has been put into treatment in Australia since 2014.
The Australian DIPG community claims that over the same period leukaemia has received $80million in government funding.
Ms Whipps also wants to know why NDIS funding has been denied to the family when Evie’s journey has rendered her disabled.
She also wonders why there are not better financial and mental health supports and programs for families facing the imminent death of a child.
Evie is due to take part in a ‘last-ditch’ drug trial in December in Perth, using a synthesised derivative of the Feverfew plant.
A family friend created a GoFundMe to help the Whipps as Joshua has been 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.
A family friend created a GoFundMe to help the family as Joshua has been unable to return to his job
Dad Joshua had to leave his job as a shutdown supervisor at an iron ore mine in WA’s Pilabara region