Team Addie Grace

My name is Lisa and this is my niece, Addie's story:

Addilyn Grace was born on May 10th, 2011. She was born a healthy baby with no complications. When she was 2 weeks old, we noticed she was still jaundice and had blood work done to check things out. Her level were still high, but we were told this is sometimes normal. As we progressed, she continued to show signs of jaundice, as well as pale stools. At that time, we knew something was not ok. This began Addie’s journey. She went through a multitude of tests, which eventually confirmed that she had Biliary Atresia. Biliary Atresia is a life threatening, rare liver disease. Biliary atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats. Biliary Atresia affects one in 10,000–15,000 live births. At the tender age of 6 weeks old, Addilyn underwent her first major surgery. She had a Kasia Procedure done to hopefully be a temporary fix. Ultimately, Addie would need a liver transplant. After the Kasia procedure, Addilyn was continually in and out of the hospital. After 3 months, we found out that Addilyn’s Kasia Procedure was not effective. She would need a liver transplant sooner rather than later. In October of 2011, we began the process of having Addilyn listed for a liver transplant. While Addilyn was placed on the liver transplant list, her dad and mom began the process of being tested to become a live donor. In just a short time, and multiple tests later, Addilyn’s mother was found to be a perfect match for her daughter’s liver transplant. On November 1, 2011, Addilyn received a second chance at life. For the first few years post-transplant, Addilyn has had some minor complications and multiple hospital stays. The need to travel back and forth, 300 miles away from home, out of pocket cost for lodging, tolls and food, parking costs, missing work without pay and never ending medical bills has put a financial strain on the family. Addilyn had a few uneventful years, and was thriving and living a normal life. Just recently, Addilyn began having some more serious complications. It was discovered that Addilyn’s portal vein was clotted, which is causing her blood to flow in different routes. This has caused a serious condition called varacies, which causes her to have very dangerous bleeds. Addilyn has had multiple hospital stays, had to have many blood transfusions, and a multitude of test done. Addilyn will be undergoing a shunt surgery, which involves taking a vein from her neck, to help repair the portal vein. This is a serious surgery that will keep her, as well as her parent, in the hospital for some time, as well as in the Ronald McDonald House for some time after discharge to make sure she is recovering without any complications.

Now that you know Addie's story, I just wanted to say that I am trying to do as much as I can to help ease the financial strain Addie's medical bills are putting on my sister and brother-in-law. There is NO cure for biliary atresia, this is a lifelong, life threatening, disease that Addie has been battling since birth and will continue to battle for the rest of her life. Every little bit helps so I thank you from the bottom of my heart in advance for any donation you are able to make.