Izzy: A Life Lived Fully, Even in the Face of DIPG
Adventurous, joyful, and full of life, Izzy was the kind of little girl who grabbed the world with both hands. Her enthusiasm was infectious, her curiosity boundless, and her courage remarkable for someone just four years old.
Camping trips, dancing in the living room, playing in mud pies, and exploring the garden—Izzy loved it all. “She had this real passion for life,” her mother, Sarah, would say. “There was a brightness about her that spread to everyone who met her.”
Izzy’s love for nature and animals was profound. From the moment she could speak, she dreamed of becoming an adventurer who would travel into jungles to find injured animals and nurse them back to health.
Sarah sometimes mused that perhaps now, in some way, Izzy cared for animals in heaven, just as she had always wanted to on Earth.
The First Signs
The family noticed subtle changes that signaled something wasn’t quite right.
Izzy, usually confident and independent, began to have falls and bruises that worried her parents. Sarah recalls, “I made a bit of a joke about getting calls from preschool for incident reports whenever Izzy fell. But deep down, I felt alarm bells ringing.”
A trip to the GP revealed slight hearing loss in one ear and a potential lazy eye. “When I realized the hearing loss was on the same side as the lazy eye, I just had this gut feeling—something wasn’t right,” Sarah said. It was a mother’s instinct that would lead them to uncover the devastating truth.
The Diagnosis
An MRI scan confirmed their worst fear. A doctor, entering the room with a box of tissues, informed Sarah and Craig that Izzy had a brain tumor in a location that made treatment nearly impossible.
“In one sentence, he virtually signed her death certificate,” Sarah recalls. Craig remembers the moment vividly: “Sarah curled over in tears, and I just stroked Izzy’s perfect little face as she slept. I couldn’t imagine life without her.”
Izzy was immediately flown to Sydney Children’s Hospital, accompanied by Sarah. Every ten minutes, Sarah would break down in tears, held by a nurse’s comforting hand. At just four years old, Izzy was diagnosed with DIPG—diffuse intrinsic pontine glioma—a rare and aggressive brain cancer with a life expectancy of only nine months.
Treatment and Hope
Despite the grim prognosis, Izzy began radiation therapy aimed at reducing symptoms and extending her life. Sarah explained, “The treatment was about giving her quality time, not curing her.” Seven weeks of radiation relieved nearly all of Izzy’s symptoms, allowing her to experience life as any other four-year-old would: playing, laughing, and exploring.
The family committed to making every moment count. They spent precious time together, swimming, playing, and preparing for special outings.
Sarah said, “From the first moment of her diagnosis, Craig and I decided we couldn’t control the outcome, but we could control her experience. We wanted to create memories she could treasure.”
Making Memories
Izzy’s courage and willingness to embrace life were extraordinary. When the family enrolled her in a new clinical trial, ACT001, they traveled to Sydney, and each hospital visit became an adventure. They explored the city, celebrated small victories, and immersed themselves in joy wherever possible.
Some of the happiest memories came from summer days filled with swimming, dancing, and laughter.
Sarah shared, “Izzy had an ability to enjoy each day fully. Our family motto became: ‘What would Izzy do?’ She taught us to approach life with bravery and joy, no matter the circumstances.”
The Turning Point
As Izzy approached her fifth birthday, symptoms began to return. Silent seizures, unsteady balance, and declining independence marked the beginning of the disease’s rapid progression.
Yet, her parents focused on creating a magical birthday experience. Izzy’s unicorn-themed party was everything she dreamed of—a day filled with happiness and wonder, making memories that would endure long after her passing.
Palliative Care and Final Moments
After a scan revealed that Izzy likely had only a few weeks left, the family turned their focus to palliative care. Over twelve weeks, Sarah and Craig dedicated themselves to enriching her final days.
They created a “disco bath” with lights, bubbles, and music, procured a specially adapted car for her wheelchair, and even arranged a visit from a real-life unicorn. Their community rallied, providing love and support that allowed Izzy’s last days to be filled with joy rather than fear.
Eventually, Izzy was placed on morphine for comfort. Five days later, she passed away peacefully at home, surrounded by her family. The streets were lined with neighbors and preschool teachers as a guard of honor, marking the profound impact Izzy had on everyone she met.
Legacy and Hope
Izzy’s presence continues to inspire her family. Sarah and Craig carry her zest for life in their hearts, striving to live fully and chase dreams just as Izzy would have wanted. Their hope has transformed: from hoping for a miracle to cherishing every moment and advocating for research into DIPG.
“Our hope now is that a cure will be found,” says Sarah. “We share Izzy’s story to help others understand the impact of childhood cancer and to encourage support for research. One day, we hope no family will have to experience the loss we endured.”
Izzy’s life, though tragically short, was a testament to courage, joy, and the profound difference one little soul can make. She taught everyone around her that even in the face of the harshest realities, life is meant to be embraced fully, passionately, and fearlessly.
