Hello my name is Kathryn I was born with a rare heart condition called Hypo-Plastic Left Heart Syndrome (HLHS). Immediately after being born I was in need of an open heart surgery and 2 more before the age of 4 ,the Norwood, the Glenn, and the Fontan. The doctors told my family and I that I would be able to live until about 50 years old without further intervention. As time has gone on my condition has worsened since I have a severe leak in my tricuspid valve, and in many cases including mine people with HLHS also develop Fontan Associated Liver Disease. Now at the age of 21 I will be needing a new heart and liver. Without it I have an estimate of 3 to 5 years. This has been a terrifying experience for both my family and I. Recently my husband and I moved to find better care since Arizona hospitals were unable to do it, due to my complex anatomy. I am unable to work because of the chronic pain I’ve always had but inevitably has worsened with my condition as well as my doctor’s advice to stay rested for fear of emergencies. The needs for a transplant are excessive to say the least. I will need a caregiver, meds for the rest of my life, and have a lot of doctor visits all while my husband works to support us. This is a lot to juggle while being young and away from family. The pain has been taking a huge toll on me and has decreased my activity immensely. I used to do sports, work, and try to stay active which I’m hoping I will be able to again with this new lease on life.