Team Nicholas

On 10 July 2016, our beautiful baby boy came into this world. Little did we know that in just eight weeks’ time our world would shatter into millions of pieces. A blood test showed that Nicholas was born with a lifethreatening disease called Biliary Atresia, a chronic condition that affects the drainage of bile from the liver and eventually causes liver failure. It meant that without urgent surgery at nine weeks of age and intense medical care to follow, Nicholas had just months to live.

Nicholas was born with a life-threatening disease called Biliary Atresia.

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 five months, a liver transplant became his only option of survival so we signed the consent form, knowing that death was a possibility. Nicholas had an 11-hour surgery by the most amazing liver team at The Children’s Hospital at Westmead. And the course of our own lives has been forever altered. Such is the gift of organ donation.

Nicholas’ journey post-transplant has been rough. In his five short years of life our son has gone 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 two 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 an evolution and we made gratitude bigger than our sorrow.

Nicholas after his life-saving liver transplant.

We sought revenge on behalf of our child by spreading awareness, hope, and shedding light on the realities of the sick kids' world. And this is how ‘Team Nicholas’ was born.

We 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 to 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 five years we’ve raised and donated close to $2m, with our latest campaign fundraising to purchase a FibroScan machine for the liver transplantation unit at The Children’s Hospital at Westmead.

Nicholas, five years old.

A FibroScan is a specialised ultrasound machine that allows an instant measure of scarring (liver fibrosis) and steatosis (fatty change in the liver) and means sick children don’t have to be 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 and looks after children with liver disease across the country. Any equipment we buy will be used by little patients from far and wide.

The Children’s Hospital at Westmead is also the main surgical unit of this nature in Australia and 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 seven days. When we exhausted our crowd funding options, I was prepared to take a personal loan and look for a sponsor to close the gap. Miraculously, I was 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 biggest gift of all.

,FIBROSCAN TRANSIENT ELASTOGRAPHY, THE CHILDREN’S HOSPITAL AT WESTMEAD ~ $185,000

This very special equipment request is a result of a conversation between Elena Reed and the team at The Children’s Hospital at Westmead where she asked, “What equipment do you need to help improve care for children like my son Nicholas?”

As medical technology becomes more advanced, new ways of assessing, diagnosing and providing treatment become possible. The FibroScan uses cutting edge technology to monitor and assess the health of children who have had a liver transplant or experience liver disease. It significantly reduces the need for a traditional liver biopsy and allows this to be done in real time — painlessly and noninvasively and taking only 5 minutes to do during a consultation.

Through this equipment, Team Nicholas and Team Humpty hope to help alleviate pain and improve the care of children with liver disease. Thanks to Elena’s efforts and the generosity of the community, some funds have been raised towards the FibroScan. Humpty hopes to find a donor/s willing to commit to the shortfall. This incredible machine will make a very real difference to Australian children and their families living with liver disease.

“Having a FibroScan will enable clinicians to accurately assess the current state of a child’s liver disease – is it stable, deteriorating or improving? This can be obtained in real-time with parents by the bedside.”

Dr Michael Storman, CHW Paediatric Liver Transplant Unit

Call Team Humpty on (02) 9419 2410 today if you can help.

One can do a lot but together we can do so much more!

Support this wish today by calling (02) 9419 2410