Ava Grace's Story
Ava Grace Chandler was born on September 28, 2021, one day after our 13th wedding anniversary. She was loved from the minute we found out she existed. We were told about 3 months into my pregnancy that she was going to be special. She was going to be born with Kagami-Ogata Syndrome - a syndrome we had never heard of before Ava Grace, but words which have since been seared into our hearts and minds. A syndrome of which only 80-something cases had ever been recorded, and of which very few doctors had even heard of, much less worked with. We love her to the moon and back, and out of our love for her, we said "yes, bring it on" to every step of the way we walked with her: fighting for information, praying for good days, advocating for the right treatments, problem solving with our amazing medical teams, and striving every day for her growth and comfort.
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Ava Grace went to her heavenly home just after midnight on August 4, 2022, after showing us 10 months of miracles. We are grateful from the bottom of our hearts for every minute we had with her. But she isn't gone from us. We had the idea for the Ava Grace Foundation two days after she passed away, in the knowledge that there are other special babies out there, and today families are walking the same path we walked. We aim to be a resource for them, for medical teams, for community support and for research, in hopes that we can help clear the way for them, and for our babies, and to help them live with dignity and joy.
If you have found us, we want to say "welcome" and we are with you.
With love,
Tonya
