Chronic. Invisible. Undiagnosed. Migraine.
Chronic. Invisible. Undiagnosed.
Once again, we thought we were going to lose Ava. We spent this past Monday in the ER as well as on January 20th. Her shunt was working but she suffered her first complex and debilitating migraine. She could not see, walk or talk. Ava has also had COVID twice, RSV twice, the flu and now another virus all since the end of August. She is trying to be so strong. It is not sustainable.
We were proud of Ava’s speech on Utah Rare Disease Day. It was hard to hear. We will be sharing it with you soon. We will keep sharing our journey over the next few weeks leading up to #UndiagnosedDay. I just wanted to take a moment to let out my tears from this week. Thank you for reading and for your continued support, love and prayers.
When I dropped her off on her first day of high school, Ava said to me, “Mom, thank you for getting me here.”
Much Love, Gina
Contact information: Gina Zanik(Szajnuk)
Co-founder and Executive Director, Rare and Undiagnosed Network (RUN)
Vice Chair, Utah Rare Disease Day Council (RDAC)
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey To Read: “Push Through” by Ava Szajnuk RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
