Sofia's Battle

Sofia's Battle Sofia passed away in April 2018. This page is to spread awareness of little Sofia's heart condition and battle with 22Q11.2 Deletion Syndrome.

It also sheds light on the struggles the family now endures. The page is managed by Sofia's family. Sofia Clare, born 3rd February 2015 at 5:03PM after a 15-hour labour. Throughout the pregnancy, she was a happy and "healthy" baby. There were plans to be able to take her home the same day as birth if not the day after (depending on time of birth). An hour before she took her first breath, the waters broke and it was then that fear lingered in the room. They feared she would be born with meconium on her lungs. As soon as she was born, she was quickly handed to mum before the doctors came to take her away. She was only meant to be taken for an hour but they decided they needed to keep her overnight. The next morning doctors came and told mum and dad that they had found a defect with her heart and had to rush her over to Grace* in The Children's Hospital at Westmead. It was there they were told she had a CHD (Congenital Heart Defect) called Truncus arteriosus. This was caused by a chromosomal abnormality called Velo Cardio Facial Syndrome /VCFS/ 22q11 deletion syndrome/ DiGeorge Syndrome. At 10 days old, she underwent her first open heart surgery. What was only meant to take 6 hours grew to 13 hours as they hit complications. This lead to Sofia coming back to us on a heart lung bypass machine. At 14 days old, she underwent her second open heart surgery. Sofia spent 22 days on a ventilator without being able to be held. Each day had its ups and downs. Finally off the ventilator and onto CPAP, Sofia was doing well. At exactly 8 weeks of age, Sofia shared her first smile. Even on lots of medication and in pain with all the tests that had to be done she was able to see the good in her life. A couple of weeks later she got sick and began a downhill decent. Almost losing her three times in a matter of five days they put Sofia back on ventilator and ran more tests. They found another problem with her heart and feared that she would not make it. The day of the third operation, mum, dad and family embraced little Sofia and hoped for the best. Seven hours later was the start of Sofia's recovery. She did better than expected. After a couple of days, they took Sofia off the ventilator and put her on CPAP. After a few weeks in PICU and lots of ups and downs, Sofia was well enough to go to the ward. With quite a bit of time in the ward with lots of "training", she was finally able to go home on the 3rd June 2015. She had physiotherapy, feeding clinic and constant doctors check-ups but she was finally getting to start her life as a normal baby. Unfortunately, after complications arising during her fourth open heart surgery, Sofia passed away on the 28th April 2018.

The pack up of Christmas Lights Display - 15 Sofa Street, Marayong NSW  has started and we would be appreciative of anyo...
03/01/2026

The pack up of Christmas Lights Display - 15 Sofa Street, Marayong NSW has started and we would be appreciative of anyone who is able to help.
Every Saturday and Sunday from 10-4pm.
Only have an hour? We will take any help.
We have sitting and easy jobs too.

As December comes to an end, we would like to thank you for the support we have received at our Christmas Lights Display...
29/12/2025

As December comes to an end, we would like to thank you for the support we have received at our Christmas Lights Display in honour of Sofia.

While the majority of people have been amazing and respectful, there have been a few that make you question humanity's intelligence, society, and how out of millions that was the winner 🤦🏻.

Our display takes months to plan, months to set up, tens of thousands of dollars (over the years), and LITERALLY our blood, sweat, and tears!!!

We have been verbally abused, disrespected, and stolen from.

Please remember that we are human and the display takes a lot from us. The whole of December, we are up late, then up early to go about our day: work, parenting, volunteering. Then to receive disrespect on our own property....

For the majority, we thank you and appreciate your support. We cannot wait to see you again and share our Sofia's memory with you.

In saying all this, we will be altering our light display times for the rest of this year. The display will turn on at 8:30pm and only run until 10pm.

Christmas Lights Display - 15 Sofa Street, Marayong NSW is still on till new year's eve. Walk through is limited.       ...
26/12/2025

Christmas Lights Display - 15 Sofa Street, Marayong NSW is still on till new year's eve.
Walk through is limited.

Pat a snake night! 7.30 - 9pm Please follow directions of staff when near our reptiles.
23/12/2025

Pat a snake night!
7.30 - 9pm

Please follow directions of staff when near our reptiles.

To our neighbours on Sofa street we want to thank you for your patience with our Christmas Lights Display - 15 Sofa Stre...
22/12/2025

To our neighbours on Sofa street we want to thank you for your patience with our Christmas Lights Display - 15 Sofa Street, Marayong NSW

The traffic is horrible, people act entitled and throw rubbish on the ground, yet you allow us to do this every year in honour of our girl.

We are trying our best to reduce stress on our neighbours and really need to ask the public for help. If there are any suggestions please let us know.

We would also like to note that the fireworks that have been going off are NOT us, nor have we organised anyone to do it for us.

See the photo for alternate parking options.

and Lacie 😀❤️
20/12/2025

and Lacie 😀❤️

20/12/2025

Sofia's Battle Raffle Draw 2025

Which day will we see you at Christmas Lights Display - 15 Sofa Street, Marayong NSW?
19/12/2025

Which day will we see you at Christmas Lights Display - 15 Sofa Street, Marayong NSW?

Find a Christmas duck night was a fun night. We want to thank our amazing food vendors for taking part and gifting our f...
17/12/2025

Find a Christmas duck night was a fun night.
We want to thank our amazing food vendors for taking part and gifting our finders with a dessert.

17/12/2025

Hazel has a new favourite food!
Thank you OMG Decadent Donuts Blacktown for your support and helping us grow our event in honour of our Sofia.

Please come show your support at our Christmas Lights Display - 15 Sofa Street, Marayong NSW and grab your amazing donuts!

Address

Sofa Street
Sydney, NSW
2148

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