Home > About the Foundation > Our Stories > Rare Disease Day > Alexander’s Story

Alexander’s Story

Alexander was born in September 2020. He was born with several heart defects and needed open heart surgery right when he was 1 week old. He needed lots of respiratory support throughout his first months of life, and required a g-tube since he couldn’t feed well from having paralyzed muscles in his face and throat. Doctors could not figure out why Alexander was born with lots of complications until September of 2022 when he was hospitalized because a pulmonary hypertension and ended up in the pediatric intensive care unit. Doctors ran a genetic panel on Alexander and discovered that he had CHARGE syndrome. Because of this diagnosis we finally discovered how to help him grow and thrive!

What would you like to tell other people about CHARGE syndrome?

People with CHARGE syndrome are unstoppable! They do not give up! They are the strongest people I’ll ever know!