Izzy was a spirited, passionate, and joyful little girl, full of energy and curiosity. At just four years old, she adored camping, dancing, dressing up, gardening, and making mud pies. Her parents, Sarah and Craig, watched with joy as she approached life with fearless enthusiasm. She had a profound love for animals and often expressed to her mum her dream of becoming an adventurer who would care for injured animals in the jungle. However, no one could foresee that her adventurous spirit would soon face challenges no child should have to endure.
It started subtly. Izzy had a few falls and minor injuries, which initially seemed normal for an active toddler. But Sarah had a gut feeling that something was amiss. Along with slight hearing loss in one ear and a potential lazy eye, these signs led to further examination. An MRI revealed the heartbreaking truth: Izzy had a brain tumor in a location that made treatment extremely challenging. The prognosis was bleak, and the family was faced with the harsh reality that their vibrant little girl was battling a life-threatening illness.
“While Izzy slept, we reached out to all our friends and family to share the news. We had to pause our lives to focus entirely on Izzy and our two boys,” Craig recalls. In the days that followed, Izzy was flown with Sarah to Sydney Children’s Hospital, where she underwent a brain biopsy and was admitted to intensive care. The diagnosis was confirmed: diffuse intrinsic pontine glioma (DIPG), an aggressive form of brain cancer with a life expectancy of less than a year.
For Sarah and Craig, the news was devastating. “I couldn’t imagine our life without Izzy in it,” Craig remembers. Yet, despite the heartbreak, the family dedicated themselves to making every moment count. They focused on creating joy for Izzy, determined to provide her with experiences filled with love, wonder, and happiness.
Treatment began with medications to manage symptoms, followed by seven weeks of radiation therapy. Miraculously, Izzy’s symptoms were significantly alleviated, allowing her to enjoy life like any other four-year-old. “She was just like a normal four-year-old girl,” Sarah says. The family cherished these moments, spending quality time together at home while awaiting the arrival of her new camper.
In January 2021, Izzy participated in a clinical trial for a new treatment called ACT001, which offered a glimmer of hope in the face of DIPG. The family traveled to Sydney for hospital visits and continued to create memories whenever possible. “From the moment Izzy was diagnosed, Craig and I agreed: We can’t control the outcome; the only thing we can control is our kids’ experience. So we committed to showing the kids the wonders of life and creating memories they could cherish,” Sarah explains.
Izzy’s courage and her ability to embrace every moment were truly remarkable. She laughed, played, and found joy even amidst the challenges of hospital treatments. “Izzy had this bravery and a willingness to try anything. Nothing held her back,” Sarah says. The family crafted magical experiences for her: a disco bath with lights and bubbles, a visit from a “real-life unicorn,” and the camper that allowed her to explore with a sense of freedom.
As her fifth birthday approached, the disease began to progress. Silent seizures and balance issues emerged, and her independence started to wane. Despite these changes, the family ensured her birthday was extraordinary—a special unicorn-themed celebration she would always remember. Shortly after, an MRI confirmed the progression of her illness, and the focus shifted to palliative care. Over the next 12 weeks, Sarah and Craig devoted themselves to making every day joyful, utilizing Bear Cottage and community support to enrich Izzy’s final moments.
Eventually, Izzy was placed on morphine for comfort, and five days later, she passed away peacefully at home. The family, community, and even her preschool teachers formed a guard of honour at sunset, paying tribute to the little girl who had touched so many lives. “It was absolutely magical,” Sarah remembers.
Even in her absence, Izzy continues to inspire. Her courage, love for life, and ability to find joy in the smallest moments still influence her family. “We carry her zest for life in our hearts, and she inspires us every day to pursue our dreams and make the most of every experience,” Sarah says. The family has also focused on advocacy, sharing Izzy’s story to raise awareness of DIPG and the urgent need for research.
“From the beginning, our hope was that the time we had together would be special,” Sarah explains. “That Izzy could enjoy life as much as possible, that she wouldn’t suffer. That she would live long enough for Lachy to remember her.” Their hope now extends to finding a cure, so that no other family has to endure the profound loss they experienced.
Izzy’s story is one of extraordinary bravery, love, and resilience. It serves as a reminder that while life can be harsh and unpredictable, the moments of joy, the love shared, and the memories created are enduring legacies. Her journey illustrates that even in the face of overwhelming illness, a child’s spirit can shine brightly, leaving a lasting impact on the hearts of all who knew her.
