inspirational kaiya
Kaiya inspired hundreds of people around the world to hold fundraising events to raise awareness for this unforgiving disease, and she encouraged 40,000 people to join stem cell registries in her name
Her story went viral on social media, it was on the radio, in the news, and it was even raised in parliament. There was a buzz of energy, people were talking about this neglected disease, and Kaiya had created a movement
who IS Kaiya?
Kaiya was the apple of our eye. She had a depth of kindest and compassion so rare in adults, let alone a child. And she was cheeky too, vivacious and active, funny and energetic, and someone who always made the most of every moment. A source of lustre to all that she met
Her passions perfectly complimented her beautiful personality; she loved flowers, rainbows, butterflies and unicorns, and you’d find her room, clothes and drawings generously laden with these
Kaiya also had a natural flair for athletics and art, regularly practicing new flips on her trampoline, running (and winning!) races with her sister and friends, making pictures and cards for us to decorate our kitchen with, or crafting pottery, bracelets and necklaces to gift to all around her. When she grew up, Kaiya dreamed of becoming a doctor, passionately relating her drive to help others
diagnosis
On 28 March, 2018 we had an afternoon flight booked to go to Disneyland, and as you can imagine, Kaiya was beyond excited to meet her fairy-tale idols. In the week leading up to this date, we had noticed a few bruises on Kaiya’s legs. Nothing out of the ordinary for our sporty child, but their size and location were somewhat puzzling, so we thought we’d get her checked before we flew, just to be safe. That day she didn’t get to go on her dream holiday. Instead, that day, and in the days that followed, we were told Kaiya had a very high risk and incurable form of leukaemia. We were told her chance of survival was small to none. We were told to prepare for the worst
That day, our world crumbled.
Over the next 9 months though, Kaiya showed us just how beautiful she really was. We watched her exuberant response when we told her she had to ride in an ambulance instead of a plane to Disneyland. We watched her zealously endure endless examinations, needles and the most toxic and aggressive chemotherapy regime with grace, grit and even giggles
Kaiya’s Treatment
Specialist doctors from around the world were incited to develop a treatment pathway where one didn’t exist. Rather than preparing for the worst, we had a plan for a cure. And unlike others before her, Kaiya responded extraordinarily well. In fact, she was cancer-free, the transplant was a success, and it was like watching a miracle unfold
Kaiya caught a virus post-transplant, and with no immune system to fight against this, she began to deteriorate. But she held on with the same strength and courage she’d consistently shown throughout, lasting longer than anyone before her in her situation, with a viral load as high as hers. And yet again, she inspired us to not give up
With support from colleagues, family and friends, we gained access to a clinical trial drug that we hoped could stop the fatal spread. But the drug came too late
And we lost.
We lost our most cherished, precious and beloved daughter. And the world lost someone that made a difference, and someone who had so much more to give
inspirational kaiya
We gazed on in amazement as she enthusiastically created the most colourful displays of art brightening up her hospital room where she spent endless days in isolation. We observed her resilience when we told her she couldn’t skip or run like she loved to because she had to wear an infusion pump as a backpack for a month. We watched her agreeableness when we told her she had to fast just one more time for yet another procedure, and heartbreakingly, her compliant smile when we told her she couldn’t go home for Christmas
When you see these qualities in a child as young as she was, in the hardest way, you learn to fight, just as hard as she was
You learn to make every moment count just as she did.
You learn to ignore the Doctors predictions, and you choose hope. You choose, just like she did, to believe in the magic of blooming flowers, rainbows and butterflies and you conduct yourself in such a way that allows her, and all around her to believe
Patients, parents, donors, and friends of the cause
