In January 2019, our son Joshua David was born with Hypoplastic Left Heart Syndrome.
He has half a working heart.
Four months in hospital, two open heart surgeries with another one to come in the next couple of years.
Approximately 1% of babies are born with a congenital heart disease, and of that 1%, about 2-3% are diagnosed with HLHS.
It is a serious, complex and incurable condition.
Sharon and I are committed Christians. While we have wrestled with the obvious "why?" questions, we know we could not have made it this far without our faith and we believe God has a Big Picture story for us and our son, even through this horrible situation.
We have been amazed at the many opportunities we've had to share Joshua's story and we've become passionate advocates for several organizations who have helped us along the way. I have always been at pains to emphasise that we never chased these opportunities. We're not publicity seekers. We were always approached from outside, and we weren't going to pass up opportunities to raise awareness and be advocates. Joshua's joy, bravery and courage has inspired and impacted thousands of people so far. Far be it from us to keep that to ourselves.
Here's a summary of the journey so far:
HeartKids
When Joshua was first diagnosed in utero in September 2018, we were referred on to the support organization HeartKids. HeartKids supports families affected by CHD in many practical ways, as well as funding research into the causes of CHD and working to find a cure and improve medical techniques and outcomes. They were there for us from the start, and are still supporting us two-and-a-half years into our journey.
In February 2019 we were given free tickets to a fundraiser run by AFL footballer Jaidyn Stephenson, who is himself a heart kid. It was Sharon's first time out of the hospital for a while, and was a great chance to connect with other parents going through a similar journey to us.
Two Feet and a Heartbeat fundraiser
We were involved in this fundraiser in 2019 and 2020. Our generous family and friends helped raise close to $2000 for HeartKids.
Part One
Part Two
Part Three
We were also asked to be part of HeartKids Covid-19 appeal
https://www.youtube.com/watch?v=Nz-pOROwOBc
We were incredibly blessed to live in the same city as the Royal Children's Hospital. So many families in our situation have to relocate to a completely different state, turning their lives upside down. We spent four months with the RCH as our second home (in Rosella and Koala wards) and are so thankful for everyone we met and who helped us along the way.
The Good Friday Appeal is the annual fundraising event for the RCH which celebrated its 90th year in 2021. In 2019 we were approaching Joshua's discharge date but were very fortunate to be able to experience the day in the hospital. We had lots of amazing visitors.
Ronald McDonald House
After Joshua was born, we were able to spend the first few days staying in the New Mother's Unit at the RCH. Once our time there was up, we were fortunate to be given a room at the new Ronald McDonald House in North Fitzroy. This was such a blessing which allowed us to stay close to Joshua at the hospital.
Now the annual fundraiser, McHappy Day, means so much more than just buying a Big Mac once a year, as we have personally experienced their hospitality and kindness during what was the hardest time of our lives.
In July 2019 we received an invitation to be guests at a fundraising launch of an organization called Finnan's Gift. It was started by Winter Olympic gold medallist Alisa Camplin-Warner and her husband Oliver in memory of their first-born son, who died of a CHD at just ten days old. Over the last few years they have raised funds for equipment and resources worth millions of dollars for the RCH.
Our names were put forward by Joshua's amazing cardiologist Dr. Michael Cheung, as Joshua had benefitted from six of the past eight donations from Finnan's Gift. We attended a special morning tea and shared about Joshua's story at the giant cheque presentation.
* HeartKids
* Royal Children's Hospital
* Good Friday Appeal
* Herald Sun
* Channel Nine and Ten News
* Ronald McDonald House
* Finnan's Gift