Charlie and Ellie's story
It was devastating when our 18-month-old son, Charlie, was diagnosed with a life-threatening disease. Then, shattered, we discovered our unborn daughter also had the same condition.
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Imagine discovering that your child has an extremely rare and potentially fatal condition. The only available treatment is offered far from home and poses significant risk, maybe even death.
Then, following nine months of traumatic treatment away from home, imagine discovering that your unborn daughter, against the odds, will face the same difficult journey.
Our son, Charlie, suddenly fell ill at eight months of age. Following a two week admission at the Royal Children's Hospital in Melbourne, he recovered and was discharged home.
Then Charlie fell gravely ill following his vaccinations shortly after his first birthday. He had four general anaesthetics in four days, time in intensive care, and seven weeks in hospital. He suffered severe systemic inflammation - his immune system was in overdrive and was essentially killing him. Seemingly endless investigations left doctors worldwide baffled.
Finally, an answer, thanks to whole-exome sequencing. Charlie was diagnosed with 'STAT1 complete loss of function mutation' - an extremely rare immune deficiency, diagnosed only a handful of times worldwide and with a high incidence of patient mortality.
A bone marrow transplant was our only hope, and so we entered the world of oncology.
Charlie's treatment left him highly susceptible to infections. Share accommodation and public transport were too risky. We needed the safety of isolation, near the hospital, and local rentals were exorbitantly priced.
We found ourselves 240km from home and wondering ‘where would we live?’
A potentially fatal condition is a dreadful diagnosis, no matter the name. We were immunology patients in an oncology world. What support was there for us? We felt very alone, uncertain and anxious.
That is when Fight Cancer Foundation stepped in, offering our family a home away from home. The accommodation centres operated by this amazing charity are only possible through generous donations from people like you.
Knowing of our plight, our local Rotary club contacted Fight Cancer Foundation's accommodation centre and before we knew it, they had taken us in. We now had a whole apartment just a short walk from the hospital.
We were overwhelmed, no longer were we freefalling, we now had somewhere safe to stay.
Charlie was isolated in the transplant ward for 83 lonely days. His new donor stem cells were good, too good, for they waged war on him. A combination of factors prolonged Charlie's treatment and vulnerability to infection. The accommodation centre became our home away from home during this worrying time.
After nine long months, we finally returned home. However, Charlie needed regular visits to Melbourne, and repeatedly we returned to stay at Fight Cancer Foundation’s accommodation centre.
But, just as we began to recover from Charlie's treatment - physically and emotionally - we learned that we were to welcome Charlie's little sister to this world.
Little Ellie had a 25% chance of having the same condition as Charlie. She was tested genetically before birth. Alas, our hopes went unrewarded.
With anguish we faced the reality that Ellie would also require a transplant, yet we were encouraged that much of the trauma and uncertainties experienced by Charlie could be avoided. At least we now knew what we were dealing with. Seeing the light at the end of the tunnel for him gave us hope and strength to face Ellie's transplant, as did knowing we would have somewhere to stay. This time we knew to avoid vaccines, public places and even breast milk for fear of passing any virus on to her.
When our family faced such an uncertain future, we were incredibly grateful for the accommodation support provided by Fight Cancer Foundation.
Sadly the global bone marrow transplant database lacked a match for Ellie. So Tony, her father, only half a match, became her donor. Ellie commenced chemotherapy treatment at the tender age of four months. Though smoother than Charlie's transplant, Ellie endured debilitating side effects of the chemotherapy during her 78 days of isolation in hospital. Finally, we were able to take her 'home' to the accommodation centre to be reacquainted with her brother.
For Ellie's transplant we were away from home for six months. How could we have managed one transplant, let alone two - a total of 15 months not including all the visits in-between - without the support of Fight Cancer Foundation and good people like you?
Two very challenging journeys. Two beautiful, resilient and amazing children. Little Ellie's tracking well though Charlie still faces some uncertainties. We are so grateful for the amazing work of Fight Cancer Foundation in supporting families such as our own. We are not out of the woods, but we dare to hope and are so thankful for each day.
Thank you for reading our story.
Merryn, Tony, Charlie and Ellie Ciavarella
