Community · Families
Ava's Story
Early Childhood
“Our little miracle — born at 3 pounds 5 ounces and fighting from day one.”
Ava arrived on October 21, 2019, in Belfast alongside her twin brother Olly, who is unaffected. At 3 pounds 5 ounces with intrauterine growth restriction, Ava was tiny but fierce. Her ZTTK diagnosis came within weeks of birth — unusually early, giving her family and medical team a head start.
She was born with three heart holes that self-closed, a cleft palate that was surgically corrected, deafness, a duplex right kidney, and gastro-oesophageal reflux. Each challenge has been met with treatment, adaptation, and an extraordinary resilience.
Her family calls Ava their little miracle, and watching her grow alongside her twin brother is a daily reminder that ZTTK is just one part of who she is.
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