The distraught parents of an 11-year-old girl who died from a rare type of brain cancer have vowed to do everything they can to make her final wish come true – a cure for the “incurable” disease that killed her.
Evie Whipps, from Bunbury, Western Australia, was taken to a hospital emergency room on February 6, 2023 after displaying worrying eye problems.
Doctors in the emergency department “dismissed” her symptoms and sent her home, but she quickly deteriorated and was rushed to a Perth hospital a week later, where she had an MRI, which revealed she had diffuse intrinsic pontine glioma. (DIPG).
On February 14, his parents Pia and Joshua received the news that is “every parent’s worst nightmare”: that Evie could have less than a year to live.
This turned out to be eerily accurate and Evie died on January 22, 2024.
“We miss her every moment of every day, but we are glad she is no longer suffering,” her mother, who with her husband created the Evie Whipps DIPG Foundation, told WhatsNew2Day Australia.
‘We planned (what we are doing now) with Evie. Throughout the year with Evie, we discussed what she would like if she had to do it again. “We’ve basically modeled this base around what Evie would have wanted.”
The distraught parents of 11-year-old Evie Whipps (pictured), who died from a rare type of brain cancer, have vowed to do everything they can to make her final wish come true.
Evie, from Bunbury, Western Australia, was diagnosed with diffuse intrinsic pontine glioma on Valentine’s Day 2023.
“The DIPG slowly took away Evie’s ability to see, hear, walk, move and eat, until she finally died trapped fully conscious inside her weakened body,” he said.
The day Evie was diagnosed, Valentine’s Day 2023, her parents were told there was no treatment or cure for the cancer slowly infiltrating her brainstem.
DIPG would slowly shut down your bodily functions until your breathing and heart stopped, but not before you suffered unimaginable pain.
Her parents were inspired by their athletic, artistic and musical daughter who had “a wicked sense of humor.”
“Evie fought for every second she had on earth and her strength was unimaginable,” Mrs Whipps said.
He said that Evie’s last words were actually quite brutal, because she was just screaming.
“It was a strange sound, but it was her trying to scream because she just didn’t want to die.”
‘She refused, and it was strange for us because we had talked about heaven and made it such a beautiful place for her.
‘Not in a religious way, but more to remove some of the fear of death.
And so at the end, when he was actively dying, he spent about 48 hours repeatedly saying, “I don’t want to die. I don’t want to die.”
“She was screaming, ‘I just want to walk, let me walk, please let me walk.’ I just want this to go away. I want to improve. “I want to be normal.”
Ms Whipps said: “As parents, I think something was broken that I don’t think will ever be fixed.”
‘He went through hell in the last days of his life. Her actual death was horrible, painful, and traumatic, and there was nothing peaceful about it.
But we know he is in a better place now. We really feel relief. He no longer feels pain, he no longer suffers.’
The Whipps have two other children, Sunny, 3, and Elsie, 6.
After Evie’s death, “Sunny spent a lot of time asking where she was because she didn’t understand,” Mrs. Whipps said.
“And now that we ask him where Evie is, he’ll say she’s in heaven, (although) he obviously doesn’t even understand what heaven is or what it means.
‘However, he misses her because Evie was a little mummy. She always was to all the little children. She was really important in Sunny’s world.
Elsie was her older sister’s best friend and they did everything together.
‘Elsie cries every day and just says she misses her sister and asks why we couldn’t save Evie. Why don’t we save her?
‘Because on a TV show, if someone gets sick, they get better and go home, and she just doesn’t understand it.
“(But) she knows Evie won’t come back.”
Big sister Evie Whipps is pictured holding and hugging her little sister and best friend Elsie.
Pictured are Evie Whipps’ scars after brain surgery
When Evie was diagnosed, her parents were told to “go home and make memories” since there were no treatment options or cure, and there was a zero percent chance of survival.
‘This was and is absolutely unacceptable to us. “We have gotten to know experts in the field of DIPG and we know that we are on the verge of some very exciting medical advances, but they need more money,” said Ms Whipps.
He said the government is not providing enough money to help, so they created the charity “to skip the middleman and go directly to the people.”
Ms Whipps is angry that, according to estimates researched by families of DIPG patients, only $950,000 has been allocated to treatment in Australia since 2014.
The Australian DIPG community claims that over the same period, leukemia has received $140 million in government funding.
The mother also wants to know why they were not eligible for NDIS funding when Evie’s trip left her disabled.
The family did not apply because other families of DIPG patients and social workers told them they would be denied.
The foundation’s initial goal is to raise $520,000 for a research grant working on creating treatments for DIPG at the University of Newcastle in New South Wales.
Donations to the GoFundMe The site they have created would help cover the cost of hiring a postdoctoral researcher in the university’s Cancer Signaling Research Group.
They know progress is likely to be slow, but will not be achieved without significant funding to help the 25 Australian children diagnosed with DIPG each year.
“Our goal is to take the DIPG survival rate from 0 to 1 per cent and then increase from there,” Ms Whipps said.
The Whipps also want to see better financial and mental health programs and supports for families facing the imminent death of a child.
“Our goal is to directly and personally support DIPG families by providing them with a lump sum at the time of diagnosis, providing food vouchers, paying for hospital parking and covering accommodation for medical appointments,” he said.
They also want the foundation to be able to provide families with wheelchair-accessible cars, as well as develop a social worker/nurse program to assist them in the very specific and unique journey that is DIPG, providing information about clinical trials and treatments.
The foundation is also raising money through events such as networking events, snacks and a raffle, with details on your Facebook site.
When Evie (pictured) was diagnosed, her parents were told to “go home and make memories” as there were no treatment options or cure, and there was a zero per cent chance of survival.
Evie Whipps’ father said she was “the kindest, funniest, brightest girl you’ll ever meet in your entire life” (pictured)
Evie and her sister Elsie appear dressed for Halloween. Evie is in the back
Speaking of his daughter’s passion for life, Mr Whipps said: “Evie wanted to be many things in life, all of them in healthcare.”
“So we will make her legacy one that saves the lives of others in the same way she would have if she had not suffered from this terrible disease.”
He previously said that 2023 has been “the worst year of our lives, although it has brought us all closer.”
He described Evie as “the kindest, funniest, brightest girl you’ll ever meet in your entire life.”
“I can’t think of any human being who deserves this less than her, she has never complained about anything, she has never complained even once.”
Mrs Whipps said that because of the trauma her family has been through, “I now look at every child, including the two I have left, and wonder if they will be next.”
‘We would never have imagined this would happen to us, so I want to talk to families and tell them that if this happened to their children, they would want more than 0 percent.
Pia and Joshua Whipps (back row) are pictured with Evie (front row center) and her sister Elsie and brother Sunny.
‘They would like to have a chance. They would want some treatment options so they can hold on to some hope. We didn’t have any.
Mrs. Whipps does not want to “see another child diagnosed in a world without hope, so I will work tirelessly and put all my anger, frustration, sadness and deep pain into this foundation to help our future children.”
“We never want to see another family struggle and blindly try to navigate through their child’s diagnosis.”
She added that she likes talking about her daughter, “although tears make me personally uncomfortable, I never want to stop talking about Evie because she was absolutely incredible.”