Our purpose

Living better lives

In the weeks before Nathan died, he was admitted to the palliative care unit at Bethesda Hospital to get his 10/10 chest pain and back pain under control. In the days before Nathan died, I watched his little body deteriorate. He stopped eating, he struggled to breathe, he was vomiting, and he had lost control of his bowels. He asked me if he was dying. I responded by saying “you’re not dying, now let’s get you back into bed” because I didn’t think he was. At 2am on Saturday 4^th September 2021, Nathan woke in severe discomfort, so I got up to tend to him. I remember his distress as he lent back on the bed with his arm over his head trying to get some relief saying, “this isn’t fair”. Then he asked, “where are all the nurses are they sleeping on the job?!”, so I literally ran down the corridor to find one for him. I ran back to Nathan maybe 20 seconds later and found him laying still, with his eyes rolled back in his head. He had died. I stood quietly beside him, in a state of shock. It was over. His lifelong battle with these two insidious diseases, that had caused him so much pain for so long, was over. For the next 30 minutes, I snuggled him up to me in his hospital bed as the nurses and doctors did their final checks. I wanted his soul to leave this earth in peace. I know he did. Nathan was buried in his favourite “yeet” youtuber jumper by Lazarbeam, so he could yeet for eternity.

I had an acute, knee jerk reaction to Nathan’s death. It was time to build the Nathan Centre – the first centre dedicated to rare diseases in Australia.

So why do we need the Nathan Centre, and how will we build it?

Although individually these diseases are rare, when you combine all 7,000 of them, they are a very common problem. In Australia, there are 2 million people living with a rare disease – around the same number as people living with type2 diabetes mellitus (1.5 million). Similar prevalence rates. But rare diseases are different. Unlike type2 diabetes, rare diseases (95%) lack treatments, whereas diabetes have available treatments such as insulin. Unlike Diabetes, most rare diseases (82%) have their onset as babies and in early childhood, not adulthood or adolescence as we are now seeing. And unlike type2 diabetes, rare diseases lack adequate funding from the Australian Federal Government to fix the multitudinous gaps in healthcare. For example, in 2021, the Australian Federal Government awarded $3.3 million dollars to the peak body for rare diseases. In the same year, the Government awarded $140 million dollars to the peak body for Diabetes. Over 40 times more funding allocated for what is a largely preventable disease occurring in mostly adults with effective treatments. Yet our children are left to battle chronic, debilitating diseases and no treatments in sight. How can we, as a community, reconcile this?

This is a wake-up call. Our children are dying. Rare diseases are finally recognised as a priority area due to being neglected for so long and the Nathan Centre aims to contribute to solving the problem.

But we need your help. When Nathan died 5 months ago, my life was in tatters, still reeling from the effects of being a full-time carer of a child with rare diseases. The fallout from rare diseases not only destroyed Nathan’s life, but also my own. Dedicating my life to Nathan came at a cost – a cost I was more than happy to bear. For the last 13 years, I have been a single mother, juggling university and work, studying in emergency departments, ICUs, and different hospital wards. As Nathan deteriorated, he needed his Mum much more, therefore I worked less. A few months before Nathan died, I sold our TV at cash converters just to put food on the table. Sometimes it wasn’t possible to put fuel in the car or even to pay for a bus ticket to get to uni. Last year I became stuck in a hospital car park during one of the worst admissions of Nathan’s life because I didn’t have $40 to pay the parking ticket. When Nathan died, I couldn’t afford to pay my half of the funeral, my carer’s pension was cut, rent went into arrears, the car brakes needing fixing, and I’ve spent a month with a chronic toothache whilst saving to pay for emergency dental care. My mental health hit an all-time low. After an 18-year fight, my life had finally collapsed in on itself.

I am sharing this to show you that the disease burden for rare diseases extends far beyond the child, impacting also the health and wellbeing of their carer. I will talk more about our research in this area a little later.

The heartbeat of the Nathan Centre is to help children, and their carers, and their families, affected by rare diseases. But the Nathan Centre is even more than that. It isn’t just about relieving the suffering and distress of rare diseases. It isn’t just about providing resources and support, or education and research.

The Nathan Centre is about living. I’m talking about living your life with your whole heart, just like Nathan did. Even in the face of extreme adversity. Even when the chips are down. Even when you think all hope is lost. To laugh with your best friends on the way home from a Wildcats game so hard it hurts; to delight in the small things like having a lovely cup of tea with your favourite biscuit watching your favourite show under a rug; to appreciate unexpected kindness from others when they offer the gift of real friendship like Lazarbeam did to Nathan; to feel wild excitement as you walk out onto a real NBA basketball court with your favourite team the Phoenix Suns. To really, really, really live. This the heartbeat of the Nathan centre, and this is his legacy – to help us live better lives. Nathan said to me once “Mum, when you are sad, go to the mirror and smile. The person looking back at you will be smiling too”.

 

 

Monique Garcia, BSc MSc, PhD candidate