No Family Should Have to Pack a Suitcase to Save a Life
I didn't expect Sydney to remind me of Jacksonville. Yet here I am, lying in another hotel room, feeling so many of the same emotions.
It's amazing how a simple hotel room can bring back so many memories.
Tonight, I'm lying in another unfamiliar bed. Living out of another suitcase. Trying to remember which cupboard I put the cereal in. Working out tomorrow's appointments, maps, Ubers and transport. Buying things we already own because they wouldn't fit in our luggage. Eating takeaway because there isn't a proper kitchen. Missing fresh home-cooked meals. Missing our own beds. Missing home.
Most of all... missing the people who should be here.
This week we're in Sydney so Evelyn can receive specialist treatment for her kyphoscoliosis. Once again, we've travelled interstate because the expertise she needs simply isn't available at home.
The team here have been extraordinary. Every single person we've met has treated Evelyn with incredible kindness, patience and compassion. They have dedicated their careers to helping children through the unimaginable, and our family will always be grateful for that. They don't just make braces. They build hope. They protect childhoods. They change futures.
But gratitude and frustration can exist together.
Although this trip is "only" Adelaide to Sydney, it has reopened memories of a journey that took us to the other side of the world.
Four years ago we were living in another country, navigating a completely different health system and trying to hold our family together while our baby fought for her life. This hotel room feels very different from Jacksonville, but it carries so many of the same emotions.
Back then, my husband wasn't a two-hour flight away. He was on the other side of the world. If something had gone wrong, there was no quick drive, no domestic flight and no familiar faces waiting nearby. There was only unimaginable distance.
Tonight, I can at least take comfort in knowing that if we needed him, Will could be here in a couple of hours. Four years ago, that wasn't possible.
And that's why this matters.
Every trip away from home reminds me that families shouldn't have to choose between the best treatment and being together. No family should have to leave grandparents, siblings, jobs, schools, support networks and everything familiar simply because the treatment they need doesn't exist where they live.
No parent should have to learn the layout of another city while their child is fighting for their health. No child should have to spend weeks or months believing hotel rooms and hospital accommodation are simply what life looks like.
Australia can do better.
The clinicians have done their part. The researchers have done their part. The engineers have done their part. The advocates have done their part. Families have shared their stories, often reopening wounds they never wanted to revisit.
Now it's time for our governments to do theirs.
Please don't wait for the perfect election announcement. Don't wait for the next budget. Don't wait for the next media opportunity. Don't wait until another family is told they need to leave Australia to give their child the best chance.
Make the decision. Make it today.
Every day this decision is delayed, another family begins the journey we know all too well. Not because they want to, but because they have no other choice. They will leave behind their support network, put life on hold, and do whatever it takes to give their loved one the very best chance.
They shouldn't have to.
I've seen what access to proton therapy can do.
It saved my daughter's life. And it can save others too.
Now let's make sure the next family doesn't also have to leave home to receive it.
The clinical need is there. The expertise is there. The infrastructure is there. All that's missing is the decision...
This little girl has taught me that hope isn't found in grand speeches, promises or election announcements. Hope is found in decisions. Decisions that mean the next family can stay together. Decisions that mean a child can receive world-class treatment without leaving the people they love. Please make that decision. Today.
Because the next family shouldn't have to pack a suitcase to save a life.
If you believe no Australian family should have to travel thousands of kilometres, or to the other side of the world, to access the best possible cancer treatment, please stand with us. Sign the petition, share it, and help us turn hope into action.