Avery’s Story

Avery’s Story

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Avery was born on August 15th, 2009.  Everything was great for Avery at the hospital, albeit borderline jaundice, she was sent home on schedule with a clean bill of health.  After a few days at home, the jaundice continued to hover around borderline high levels and was informed from the newborn screening that Avery had tested positive for galactosemia.  This was something neither of her parents had heard of and knew nothing about.  Avery was immediately switched to a soy-based formula and another more conclusive test was scheduled, as this result commonly was a false positive.  Almost immediately after this result, Avery became lethargic, was not eating, and began projectile vomiting.  Without having a conclusive result, and the fear of dehydration and the unknown, Avery was taken to the emergency room for immediate care.    This turned into a weeklong hospital visit where Avery was put through a non-stop battery of tests while her parents awaited the results of a conclusive galactosemia test.  Avery braved dozens of tests and saw every pediatric specialist available while mom and dad spent countless sleepless hours fearing the worst, and doing their best to understand what galactosemia is.  When the results finally came in and confirmed the newborn screening results, Avery had already started to take great strides and was back to being a seemingly healthy child, and everyone was on their way to enter the world with a lot to learn, but even more to love.

Since leaving the hospital, there have been a few bumps in the road, with small cataracts in one eye, however, Avery has continued to grow and is developing into a wonderful little girl.  Galactosemia has introduced Avery to a tremendous support system of wonderful doctors and an amazing group of friends/families that she is blessed to have in her life. Avery and her parents have already learned a lot and will have a lot more to learn along the way, but look forward to spreading the joy and love that her beautiful smile and energetic and carefree personality bring to everyone around her.