Nelson's Story

Avery’s ALGS Story

Avery Glenn

Avery Glenn was a feisty, headstrong girl who lived her brief life to the fullest. She was born with a severe case of jaundice, which was the first sign of her Alagille syndrome, though she was not diagnosed for over two more years. Her primary symptoms were severe itchiness, which caused to rock and bang her head into the couch constantly, and her small size, which originally led to a diagnosis of failure to thrive. Once Avery was diagnosed with Alagille syndrome, she responded extremely well to medicine that controlled her itchiness, so she grew to an above average height by age 4. Anyone who did not know how sick she was would have thought she was a perfectly healthy child. Unfortunately, at age 4 we learned that Avery had segments in a variety of her arteries that were far too narrow, which restricted blood flow, most notably hundreds of such arteries in her lungs. Avery passed away due to complications related to the ballooning of her arteries. Avery made the most of her few years of life. Her main interests were dance, especially tap dance, soccer, and reading books. She also loved tussling with her two older brothers. She more than held her own even though they were more than twice her size. The greatest gift her brothers gave her was to treat her like a regular sister, not one who was ill. More than anything else, she hated being defined by her condition and wanted to be treated the same as everyone else. In the last year of her life, she went to doctor visits on a weekly basis, but always would peel off her band-aids from blood draws and stickers from doctor visits so no one would know she had a doctor’s visit. She was an amazing little girl who is missed dearly by so many people who loved her.

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