Zyon's Story is shared by his mom, Morgan St. Marks.
Zyon was always the happiest boy, with the most beautiful blue eyes and the biggest dimples.
Around four to five months old, Zyon began having feeding issues and started to lose weight. He was diagnosed with failure to thrive. As he grew older, he continued to miss developmental milestones.
At eight months old, Zyon experienced his first and only hospitalization. After reviewing his medical history, doctors decided to run a full genome panel. That’s when we learned my husband and I are both carriers for Leigh Syndrome, and Zyon had an NDUFS7 mutation.
His MRI revealed brain lesions throughout most of his brainstem and extending down his spinal cord. Despite doctors’ efforts, he was unable to come off the breathing tube. My husband and I then faced the incredibly difficult decision to remove the tube and let Zyon pass peacefully, surrounded by love.
Before we knew of his diagnosis, Zyon took his first flight from Washington to Wisconsin, where he met all of his family, including his great-great-grandpa. He even traveled to Chicago to explore the Shedd Aquarium, where he adored the beluga whale and absolutely hated the stingrays.
Though Zyon is no longer physically here with us, he is always with us in our hearts. When we see an eagle flying overhead, we know it’s Zyon checking on us. I also carry him with me in a memorial tattoo, as do many of our family members.
