Joshua's Journey So Far: Turning Heartbreak into A Life of Advocacy

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.

Jaidyn Stephenson's Show Your Heart lunch and fundraiser
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. 

Sweetheart Day (Feb 14) and Congenital Heart Disease Awareness Month

Joshua was just two weeks old when we got our first request to share his story (full article here). Melbourne parenting magazine Kidspot were partnering with HeartKids to raise awareness for CHD Awareness Month, and they adopted February 14th as 'Sweetheart Day.' We were also approached by Melbourne newspaper the Herald Sun as part of an article announcing extra government funding for CHD research.

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.

Super Boss Day / Be a Hero For HeartKids (fundraiser)

Sharing Joshua's story on the HeartKids Blog

In 2020 I had the opportunity to share some of Joshua's story on the HeartKids blog, with the aim of inspiring and bringing hope to people who might be going through a similar journey to our family.

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

The Royal Children's Hospital and Good Friday Appeal

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. 

In September 2020 I shared a snapshot of our story on the RCH website as part of their 150th birthday celebrations. Next thing I knew, we were featured on Channel 9 and Channel 10 News! 

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.

In the lead-up to the day, Joshua's story featured in the Sunday Herald Sun and we received a visit from a couple of Essendon football players (Daddy's team!), Mason Redman and Andrew McGrath.

In 2021 we were pleasantly surprised to be featured on the photo wall during the telethon.

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. 

Finnan's Gift
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.

It was incredibly humbling for us to be chosen by Finnan's Gift to represent heart families and we had now formed a connection with Alisa and Oliver. We followed that up in October by joining Team Finnan's Gift in the Melbourne Marathon. We completed the 3km walk and it was Joshua's first time on the MCG!

 

And that's a little snapshot of an amazing two-and-a-half years so far. We are incredibly thankful to God for providing these opportunities, and thanks to the following organizations for looking after us and allowing us to share Joshua's story in order inspire and impact others:
* HeartKids
* Royal Children's Hospital
* Good Friday Appeal
* Herald Sun
* Channel Nine and Ten News
* Ronald McDonald House
* Finnan's Gift