Anoura was born on Thanksgiving in 2015. She was a very healthy baby until her skin became yellow and her stool became chalky. I remember being at my six week post checkup and I had to change her diaper. Immediately I took her to her pediatricians office. I was warned about this very complicated and fast paced Liver disease called Biliary Atresia.
Two weeks later at one day shy of Two-months of life she was diagnosed with Biliary Atresia and had her first surgery, called the Kasai. Things were going fairly smoothly with only a few hospitalizations until about October, she needed a feeding tube placed. However, due to unknown varices. About 6 days after the initial placement she threw up a good amount of blood. She had two transfusions that night. And spent a good seven weeks in the hospital .
From here her disease spiraled and she had a lot of infections. Her stomach stared to enlarge due to Ascites (fluid build up) and she was also going in for drains frequently. The tenth floor of that hospital became a home. She was listed end of June, and transplanted two weeks later in the first week of July. Since then she’s had barley any scares.
We were even discharged from the ER for the first time ever. Anoura’s donor is unknown to us, but has become a huge part of our family and has become a hero to so many who know Anoura. We can’t begin to thank the family or explain the impact. But for all of her firsts… we thank you.
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