Ava Grace Chandler
September 28, 2021 – August 4, 2022
Ava Grace Chandler passed away peacefully in her mother’s arms, at 12:15 AM on August 4th, 2022. She was 10 months old. Ava Grace was born with an incredibly rare genetic difference called Kagami-Ogata Syndrome (KOS). Fewer than 100 children have KOS worldwide. KOS has many hallmarks that make survival at birth highly unlikely. Ava Grace beat those odds, then gave us 10 months of miracles, surprising and inspiring everyone she met with her smile and tenacity. She loved to hold hands, anyone’s hands, to wave, to read stories (especially Pancakes! Pancakes! By Eric Carle and Whistle for Willy for Ezra Jack Keats), to play with her brother Jack and sister Cece, and to happily chew on stuffed animals, especially those with soft fur. Her favorite was bath time, which was a daily spa trip to her, complete with bows and pigtails for her gorgeous copper-red hair. That red hair matched the fire inside, as she was the strongest little warrior any of us have ever seen. She was a pure and innocent expression of God’s love on earth, the greatest gift, and a wise teacher for all of us. In her last hour on earth, her mama and daddy took her to the rooftop garden at Children’s Hospital of Alabama, where her mama held her, she felt a beautiful breeze on her cheeks for the first time, and her daddy read her Goodnight Moon under an open night sky. She is survived by her parents Tonya and Joe Chandler and siblings Jack and Cece of Homewood; grandparents Tony and Debbie Johnson of Athens and Kathy Chandler (Jerry, deceased) of Anniston; and numerous loving Aunts, Uncles, and Cousins. The nurses, respiratory therapists, doctors, and staff of UAB’s NICU (Blue Pod) and Children’s NICU also quickly became family, and they always will be. Very little is known about Kagami-Ogata Syndrome, so Tonya and Joe, with the love and support of family, are starting a non-profit organization to support research, advocacy, and education about KOS. In lieu of flowers, please donate to Team Ava Grace, which will be used to establish the foundation: https://www.gofundme.com/f/help-ava-grace-beat-the-odds-teamavagrace Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these. (Matt. 19:14) What will separate us from the love of Christ? (Rom 8:35) Whether we live or die, we are the Lord's. (Rom 14:8) A a celebration of life for Ava will be held Saturday, August 13, 2022 from 1:00 PM to 2:00 PM at All Saints Episcopal Church, 110 W Hawthorne Road, Birmingham, AL 35209. Fond memories and expressions of sympathy may be shared at www.ridoutsvalleychapel.com for the Chandler family.See more See Less
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Ava Grace Chandler
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