"At 6pm on the 25th March 2019, we took our beautiful 3 year-old daughter, Harper to the doctor for a suspected stomach bug. Upon arriving at our local GP and observing Harper in the waiting room, we noticed a range of other symptoms which were out of character for Harper including clumsiness on her left side, slurred speech, and deviation of her left eye.
By 9pm that night our lives were turned upside down in an instant by the news that Harper had a brain tumour. Within hours at arriving at Sydney Children's Hospital, we were looking a CT scans that showed a 5cm mass located in a compromising position in Harper's brain - the very worst news any parent could ever be told.
Later that night the pressure from a build-up of fluid on Harper's brain resulted in emergency surgery being performed, without doubt, the most stressful minutes of our lives".
18 hours later Harper underwent yet another emergency surgery to have the tumour removed. From there, we spent 11 days in ICU and commenced Harper's post-surgery recovery whilst we anxiously awaited pathology results.
Our worst nightmares were realised when we received the heartbreaking diagnosis. The tumour was a Stage IV Diffuse Midline Glioma. Without being technical, this means our beautiful daughter had an extremely rare and aggressive cancer found in only a handful of children each year. Nothing could have prepared us for this devastating diagnosis.
After weeks in hospital, we were finally able to go home and had the weekend to enjoy before the start of a 30 treatment radiation plan.
Unfortunately, Harper's diagnosis was deemed "the worst of the worst". Harper lost her battle with cancer the day before her fourth birthday.
Just writing these words has been the toughest thing we have ever had to do. We would like to take this opportunity to thank everyone for every thought, prayer, and well-wish of support."
Unfortunately Harper's story is one of many.
By supporting RUN DIPG, Hundred 4 Harper will improve outcomes for patients and their families impacted by the deadliest form of childhood cancer – brainstem cancer, also known as Diffuse Intrinsic Pontine Glioma (DIPG) or Diffuse Midline Glioma (DMG). It is our mission to raise awareness of this disease, and to generate funding to support the advancement of DIPG/DMG research.
In doing so we hope that Harper's memory will live on and her legacy will continue to inspire others.