Ava Szajnuk (Zanik) is a 16-year-old sophomore at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all of her milestones early. When she was three years old, they found an arachnoid cyst. When Ava was five years old, she was told she had an undiagnosed genetic dysfunction, an undiagnosed autonomic neuropathy and many more syndromes. In 2013, Ava went on to have four cranial surgeries due to a subdural hygroma and is now shunt dependent. Ava continues to search for answers for the root cause of her disease processes. She has two siblings and a mother that all have an undiagnosed rare disease. Ava is on the Advisory Board for the Rare and Undiagnosed Network (RUN). She has spoken publicly at the Utah State Capitol as well as at the University of Utah Health to the freshman classes of medical students. She is a patient, a caregiver and an advocate. Although Ava’s disease process has hindered many of her physical abilities, it has given her the opportunity to see life through a more empathetic lens. Ava is talented at writing, drawing and swimming. She also enjoys singing and her guitar. She is a part of the Congress debate team at her school. She loves to spend time with family and friends. Her mother is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN) and her father is the GM for the NBA Utah Jazz. Learn more about Ava’s Journey
