On 10 July, our beautiful baby boy came into the world. Little did we know that in just 8 weeks' time, our world would shatter into millions of pieces.
A blood test showed that Nicholas was born with a life-threatening disease called Biliary Atresia, a chronic condition that effects the drainage of bile from the liver and eventually causes liver failure. It meant that without urgent surgery at 9 weeks of age and intense medical care to follow, Nicholas would have just months to live.
To us, his family, the news was devastating. This disease is not genetic. It is not something that mum did or didn’t do during pregnancy; it just happens. And it can happen to any baby born to healthy, active adults.
Unfortunately for Nicholas, the surgery didn’t work. What followed were endless blood tests, hospitalisations and more invasive procedures. At 5 months, a liver transplant became his only survival option, so we signed the consent form, knowing that death was a possibility. Nicholas had an 11 hour surgery with the most amazing liver team at The Children’s Hospital at Westmead. The course of our lives has since been altered forever. Such is the gift of organ donation.
Nicholas’ journey post-transplant has been rough. In his 5 short years of life, our son has been through endless invasive procedures, over 300 blood tests, numerous hospitalisations, including Paediatric Intensive Care Unit admissions, sepsis, rejection, complications, immunodeficiency and more.
Living with a childhood liver disease is like walking on eggshells; you never know what to expect. There are over 100 different liver diseases that can affect children and young people, and every day, 2 children get diagnosed with a life-threatening liver condition. The causes are largely unknown. Most require a liver transplant; all require a lifetime of care.
Very early in this journey we made a commitment that this disease would not destroy everything we have. Our grief was evolving, and we made gratitude bigger than our sorrow.
We sought revenge on behalf of our child by spreading awareness and hope, and shedding light on the realities of the sick kids’ world. And this is how ‘Team Nicholas’ was born.
Mum Elena with baby Nicholas
‘Team Nicholas’ are a passionate and like-minded group of individuals who have come together through social networks to not only support Nicholas on his journey, but make a meaningful difference to gravely ill children. We use our own resources, time and energy to fundraise for those who need it most.
In the last 5 years, we’ve raised and donated close to $2 million, with our latest campaign fundraising to purchase a FibroScan machine for the liver transplantation unit at The Children’s Hospital at Westmead.
A FibroScan is a specialised ultrasound machine that allows for an instant measure of scarring (liver fibrosis) and steatosis (fatty change in the liver). With this machine, sick children don’t have to get subjected to as many invasive procedures. It also means timely diagnosis and urgent treatments because time is everything when it comes to childhood liver disease.
Westmead Liver Transplantation Centre is the main paediatric liver transplantation centre in Australia that looks after children with liver disease. Any equipment we buy will be used by little patients far and wide. The Children’s Hospital at Westmead is also the main surgical unit of this nature in Australia. Since the beginning of the COVID pandemic, the liver transplant team have performed 18 liver transplants and conducted 22 liver assessments.
Our initial plan for the FibroScan was to fundraise as much as we could, and we did well, raising $43,500 in just 7 days. When we exhausted our crowdfunding options, I was prepared to take a personal loan and look for a sponsor to close the gap.* Miraculously, I got approached by the Humpty Dumpty Foundation, and I learnt about the incredible work the organisation does. I was left speechless by the generosity and humility of its donors. Truly, it is the greatest gift of all.
One can do a lot, but together, we can do so much more!
*With the support of a generous donor, Humpty was able to help 'Team Nicholas' complete the funding of the FibroScan, which got delivered to the Children’s Hospital at Westmead in mid-2022.
By Elena Reed