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Gianna’s Story

When Gianna was born in 2005 doctors told us she was deaf and blind and probably would not live to be 2 years old. It was a miracle that she had lived at all due to the fact she had bilateral choanal atresia (blocked airway) and was having to breathe from her mouth only. After years of surgeries and testing, we soon showed those doctors the beautiful gem that God had given us. Her sweet, innocent light shines in so many ways. Gianna is blind in her micro eye but has just enough vision in her other eye to be able to get around ok as well as being able to read and write 🙏. She has mild to moderate hearing loss but with the help of cochlear implants, she’s able to hear fine. She does struggle with adhd, anxiety, dyscalculia, and trying to find a group of peers that she can relate with. She also cannot smell and has mild ASD characteristics. She is a very typical teenager with her dreams, goals and wishes. Though she may be small (5.0), she is fierce. She is my hero and I can’t wait to watch all her dreams come true.

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

They are fighters. They need help finding their place so they can grow into the beautiful happy people that they are.