Hi, my name is Tracy and I am fundraising for my niece Sienna and her husband Jay and their beautiful family.

Avayah born October 14, 2024,

After spending 203 days in hospital, surviving a rare and life-threatening condition, and enduring surgery and countless setbacks, little Avayah has proven she’s a true fighter.

But now, just weeks after finally coming home, she’s back in hospital, while her dad, the family’s sole breadwinner, is also too unwell to work.

This family has faced more in ten months than most do in a lifetime. Your donation today will help them keep their home running and focus on what matters most, keeping their two little girls safe and cared for.

Their story

On October 14th, Sienna and Jay welcomed their beautiful daughter Avayah into the world, growing their family from three to four, with big sister Everly, who turned two soon after, eagerly awaiting her new sibling. Their joy was short-lived when, less than a month later, Avayah became unwell and was struggling to breathe turning blue. She was rushed to the ICU at Gold Coast Hospital, where doctors worked tirelessly to find answers. Avayah underwent numerous intensive tests, including a lumbar puncture, as her tiny body fought to survive. Eventually, she had surgery to fix what was believed to be a flap in her oesophagus blocking her windpipe, preventing proper oxygen flow.

Though the family left the hospital thinking the worst was behind them, Avayah’s struggles continued. On Christmas Day, her breathing worsened again and the family rushed her to the hospital, only to face delays due to the holiday season and limited staff. They were eventually transferred to the Queensland Children’s Hospital in Brisbane, where they remained in the PICU for five and a half months.

After many unanswered questions, Avayah was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), a rare and life-threatening condition that affects only around 1,000 to 1,200 people worldwide. CCHS affects the autonomic nervous system, which controls functions such as heart rate, blood pressure, digestion, body temperature and most of all breathing. The condition prevents Avayah from regulating her own breathing, meaning she needs life-long ventilatory support to sleep safely. Tragically, there is no cure for CCHS, and it is potentially the leading cause of SIDS. Avayah now requires a respirator to help her breathe during sleep.

Despite these challenges, Avayah is a resilient and joyful baby, reaching developmental milestones, gaining weight, and thriving as a happy little girl. However, she still requires significant medical support, especially while sleeping.

The toll on the family

Sienna has been at Avayah’s side in hospital since day one. Jay, the sole breadwinner, had to significantly reduce his work hours to care for Everly and support Sienna living in Ronald McDonald House with Everly. Both sets of grandparents (Greg & Shar and Michael & Wendy) have provided support, cooked meals, looked after the family’s much beloved dog Skyla, and have helped wherever possible travelling to Brisbane to provide much needed respite.

The NDIS covers essential medical equipment and night nursing support, which is invaluable as they watch Avayah sleep whilst the rest of the family can get a good night’s rest.

Coming home - then another setback

After 203 days in hospital, Avayah & Sienna finally came home in mid-July 2025. The family was beginning to settle into a new routine, until Influenza A struck the household. On 8 August, during Avayah’s nap, Sienna & Jay noticed her colour change and realised she had turned blue. Jay called an ambulance while Sienna performed CPR, saving her little girl’s life.

Avayah remains in hospital recovering. Everly has been unwell, and Jay’s condition worsened to the point that he too required hospitalisation. This has left the family in crisis once again.

Why we’re asking for help

My niece and her family are incredibly strong, never complaining, never asking for help. But the truth is, they need it now more than ever. With Jay unable to work again while he recovers and supports his girls, the financial pressure is overwhelming and adds another layer of burden this young family just doesn’t need currently. They keep taking these knocks like champions and have never showed anything but determination.

I want to give this family the support they would never ask for themselves. Any donation, no matter the size, would mean the world to them. If you can’t contribute financially, please consider sharing this page so we can reach as many people as possible. My hope is to give them some breathing room after an incredibly challenging year, so they can catch their breath, feel secure, and focus on getting back on track.

Your thoughts, support, and love are deeply appreciated. Together, we can help ease the financial burden and provide this family with the chance to focus on their precious baby girls. Thank you for your kindness and generosity.