2017 Stamford LIVEr Champion: Delfina Walencik
Delfina is our sweet, beautiful & spirited little girl. You would never know by looking at her that she lives with a rare liver disease called Biliary Atresia, a disease that affects 1 in 20,000 infants. She made a grand entrance into our lives on January 31, 2013. Eight days late I may add which was our first insight to her wild spirit that life is on her terms. She was born with neonatal jaundice, aka: newborn jaundice, with unusually high bilirubin levels. They slowly lowered enough for discharge and we were instructed, as with our oldest, to give her lots of sunlight. At her four week checkup we were sent to Columbia Presbyterian’s Children Emergency Room as her jaundice had returned. Over the next 4 weeks we would meet our amazing gastroenterologist, Dr. Nadia Ovchinsky, and she would run every test under the sun. We were informed it could be as simple as a vitamin deficiency or worst case biliary atresia. After a liver biopsy it was a confirmed diagnosis of biliary atresia and at 54 days old Delfina would have the Kasai procedure. This procedure surgically bypasses the non-functioning bile ducts and allows drainage into the large intestine to prevent any further damage to the liver. After 8 excruciating hours we were reunited with our beautiful baby and she has been making tremendous strides ever since. We are aware that many families are not as lucky as we. Many need a liver transplant before they are 1yr old and within the first year of surgery. Delfina continues to light up our lives and the lives of those around her. She is the greatest sister and our feisty 4 year old that never ceases to amaze us. As I write this it has been 3 years and 341days since her surgery and we count our blessings with each pass day.