Meet Ava
Ava is a brave, kind-hearted and resilient girl who loves colouring, crafting and listening to Disney music. Born with a rare genetic condition and having 10 major surgeries since birth, Ava takes her infectious smile on the road every few months from Grande Prairie to Edmonton to visit her team at the Stollery.
When Ava was two months old, her parents started to get concerned that she wasn’t growing enough. A visit to the doctor revealed a heart murmur, and she was immediately sent to Stollery Children’s Hospital in Edmonton, where she would stay for the next three months. One week after she was admitted, she had open-heart surgery. Following surgery, Ava was sedated, vented and her parents weren’t able to hold her for nearly a month.
She was diagnosed with a congenital condition called Digeorges syndrome, a rare disorder resulting from a deleted chromosome during development. She has several defects concentrated around her midline: a heart defect and significant issues with her digestive system and bowels. She was also born without part of her thymus, which means her immune system is compromised.
Ava’s many surgeries weren’t without complications. At one point, she experienced a bowel perforation which caused her to go into septic shock. Her parents thought they were going to lose her, and they’re grateful for her Stollery medical team who jumped into action to treat her.
Ava still visits the Stollery every two to three months for follow-up appointments with her pediatrician, and she has a yearly echocardiogram follow-up on her heart. When she’s older, she will need a heart reconstruction. In the meantime, thanks to the experts at the Stollery, Ava gets to enjoy doing the things she loves, like playing with her friends and being the best big sister.