Our daughter, Karsyn Grace Andricks, was born February 25, 2004 in Decatur, Illinois. Other than being born with a little case of jaundice, she appeared to be a completely healthy little girl. Six weeks after her birth, we noticed that the jaundice did not seem to be getting any better. We took her to the pediatrician for examination. He displayed some concern, but simply indicated that bloodwork
was necessary to determine what was happening. The next day, he called us back to his office. When we were called back, he took us to his office instead of an observation room like normal. We immediately knew something was wrong. He told us that Karsyn had some sort of defect with her liver and we would need to take her to St. Louis Children’s Hospital right away. He had already made an appointment for us to see a gastroenterologist. She was tested for many different diseases and two other diseases were ruled out after time. Finally, she was diagnosed with a liver disease called Progressive Familial Intrahepatic Cholestasis Type I (PFIC 1). She did not have enough small bile ducts inside the liver which caused the bile to back up under the skin resulting in jaundice, and an internal itching from the bile acids and salts pooling underneath the skin. After this diagnosis, she was put on medications to alleviate the symptoms of itching and in attempt to help bile flow through the ducts. Unfortunately, with time the itching progressively got worse. Eventually, it got so bad it kept her up at night as well as us. She would scratch until she bled and dig in the blood. Additionally, it caused scarring (fibrosis) of the liver due to the bile back up. We were told that eventually this disease would result in liver failure. After many years of dealing with the itching, lack of sleep, lack of growth, among many other issues, we reached for a procedure called Biliary Diversion to help alleviate the itching. This procedure required her to have an ostomy with a bag attached to catch bile in an attempt to give the bile another outlet. This surgery had a 50% chance of success, and it was not. She had the bag for two years. Finally, after much thought, discussion and prayer, we met with her doctors and liver team at St. Louis Children’s Hospital to discuss a liver transplant. It was the only thing that would cure her itching and jaundice. She went through an extensive evaluation and testing and was approved to be listed for transplant. Sometime in June of 2012, she was listed for transplant by the United Network of Organ Sharing (UNOS). She was listed for approximately five weeks before we received the call to go to St. Louis for her transplant. After Karsyn received her transplant and had healed from her surgery, our life started to gain some normalcy again. As we reflected on our journey over the first eight years of Karsyn’s life, we felt we needed to do something to thank the many people who helped us get through this difficult stage of our life. We also believed that we could do something to help other families going through similar situations like what we endured. We decided to start a not-for-profit foundation that would attempt to raise funds and awareness for organ donation, but would also be centered on providing support to families dealing with the organ transplant process. We held our first event on July 21, 2013, which was the one year anniversary of Karsyn’s transplant. This event was simply to invite our family and friends who supported and prayed for us and share our thanks for the love they showed us. The format we chose was a dinner, silent auction, guest speakers and music for entertainment. Funds were raised by the purchase of a ticket, which covered the expenses for the facility rental, the meal and a Karsyn’s Kause t-shirt, as well as the sale of the silent auction items. Proceeds from this event went to Gift of Hope Organ and Tissue Donor Network of Illinois, St. Louis Children’s Hospital, and Make-A-Wish Foundation. During the planning process for this event, we formed the Corporation for the Foundation. We are currently planning for our annual Board of Directors meeting in November. We will discuss the final outcome for the fundraising from this year’s benefit and begin discussing ideas for next year. Our future plans consist of holding an annual fundraiser on the anniversary date of the transplant and possibly other events where deemed appropriate by our Board of Directors. Future funds raised will go toward assisting families dealing with the transplant process. The main need will arise from expenses incurred from the surgery itself or the additional costs of lodging, travel, and meals from hospital stays. Another opportunity would be to assist with costs for medications associated with anti-rejection after the surgery. We would rely on guidance from hospitals that perform transplants for identification of families with financial needs. The other major effort that our foundation will pursue is providing support to families dealing with the challenges of the transplant process. From the development of a website and through personal connections and relationships, we will focus on reaching out to pray for families, talk with families in person, or speak at social gatherings.
