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.

We are starting to get some amazing food vendors who are coming to support us during our special events. Keep an eye out...
17/11/2025

We are starting to get some amazing food vendors who are coming to support us during our special events.

Keep an eye out for our event schedule!

We have been doing some light testing at Christmas Lights Display - 15 Sofa Street, Marayong NSW. We have some amazing s...
16/11/2025

We have been doing some light testing at Christmas Lights Display - 15 Sofa Street, Marayong NSW.
We have some amazing surprises to show you!!!!
Sofia's memory is shining brighter than ever!

20/10/2025

09/10/2025

Introducing Jason, 11 years old and a resident of Armidale. Today, he heads home with the help of our friends at Hyundai Help for Kids … with us on every mission and helping us transfer from hospital to hangar with wheels from the heart.

Jason has a complex medical condition requiring specialist care at The Children's Hospital at Westmead, some 6-hours drive from home. With monthly appointments scheduled for the foreseeable future, the help from Little Wings will be the lift that this family need to make every appointment with ease.

Jason, your journey is our mission. ✈️

WANTED: Raffle PrizesWe’re preparing for our Christmas Lights Display – Shining Bright for Sofia and are seeking donatio...
07/10/2025

WANTED: Raffle Prizes

We’re preparing for our Christmas Lights Display – Shining Bright for Sofia and are seeking donations of raffle prizes to raise funds for:
• HeartKids Australia
• 22q Foundation Australia & New Zealand

Every donation, big or small, helps raise awareness, support families facing similar challenges, and keeps Sofia’s memory alive.

Prize ideas: gift cards, hampers, electronics, vouchers, family passes, experiences and more.

To donate, please contact us at admin@sofiasbattle.com.au or visit www.sofiasbattle.com.au.

We have started setting up our Christmas Lights Display - 15 Sofa Street, Marayong NSW. We are a bit worried we won't co...
05/10/2025

We have started setting up our Christmas Lights Display - 15 Sofa Street, Marayong NSW.
We are a bit worried we won't complete the set up before December 1st, so if you have a spare day/ hour on the weekend we would love to kindly ask you to come help us. 🙏🏻

We are still also after donations for our raffle - basket, fillers, gift cards etc.

Dear time,Can you please stop for a moment? I need you to. My child just passed and I need a moment to catch myself.If y...
03/10/2025

Dear time,
Can you please stop for a moment? I need you to.
My child just passed and I need a moment to catch myself.
If you can just pause for a moment to allow my brain to comprehend and my soul to mend.
My heart may be able to keep beating if I have time to rest.

I don't know if I could continue, maybe this is my end.

Sincerely,
Grieving parents.

Address

Sofa Street
Sydney, NSW
2148

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