When Aurora was just 3 days old, her life was quickly intertwined with the complexities of congenital heart conditions including Ventricular Septal Defect (VSD) and Patent Ductus Arteriosus (PDA), which mean there are abnormal openings in her heart walls, affecting blood flow and putting strain on her heart. Additionally, Pulmonary Hypertension increases pressure in her lung arteries, making it harder for her heart to pump blood.
A month in the NICU then revealed a rare micro XQ-28 deletion and the absence of her FLNA gene, which was the cause of her heart conditions. Aurora was then diagnosed with Atrial Septal Defect (ASD). Her family travelled from the ACT to Westmead Hospital, to begin Aurora’s treatment on the 31st October 2023.
For the next 182 nights, Aurora’s Mum and Dad’s depended on Ronald McDonald House in Westmead to provide them with a safe haven with 24-hour wraparound support.
“Ronald McDonald House has helped my family tremendously, it meant having a home away from home and still being able to have both of us with her through this whole experience, we were able to help support Aurora by taking care of ourselves as well, we were still able to keep our family together because of RMHC.” Aurora’s Mum, Emily.
Aurora went home on March 19th but will return to the House for short visits and ongoing treatment throughout the year. Emily says, “We will miss RMHC soooo much thank you for all that you guys did for us. We’ll forever be thankful.”
