Over the last year, we have had incredible circumstances as an Alagille Family. My daughter, Cloe, is currently on the liver transplant list after a diagnosis of hepatocellular carcinoma (liver cancer) in April 2023, which popped up inside  an already incredibly diseased liver with many noncancerous tumors, an enormous mass across her whole left lobe, and advanced cirrhosis. Her liver is fighting to stay stable as part of Alagille Syndrome, a rare cholestatic liver disease she has lived with her entire life. She feels the effects of her liver health declining everyday. Her sister and I watch her physical decline made obvious by her terribly jaundiced skin, deep yellow eyes, and overall illness symptoms. Further, her plans for the future are paused while moving through this disease decline and the tremendous losses it forces on her each day. Adding up the costs of this syndrome emotionally alone and seeing how it has affected my children is hard to process, as well, transplant is not a shiny coin or prize, but a fragile intimate gift that is not a guarantee. The girls are staying positive, so am I, and we are always working to ensure the best outcomes by being as prepared as possible. We try to laugh, crack jokes, and work through the difficult moments trying to be understanding and sensitive toward one another. How do you quantify the impacts of all of this on a family and how do you help them get through it? 

The ALGSA understands 360 degrees of all that comes with moving through a life-long syndrome with considerable ups and downs. It unites and fosters a community that comes together with compassion, openness, generosity of time and patience, and strength when we are simply.....low.

With over 7,000+ rare diseases, 80% have genetic causes. Almost 70% present in children and only 5% have approved treatments. Over 300 million people live with rare disease. Counting their family members, it's easily an enormous amount of people affected. Many of these families cannot find the help or resources they need to get through what we are going through. They have no where to turn. The ALGSA is making an incredible difference for families by providing a safe space, financial help, and resources that directly relieve stress. It is small and always engaged and ready for families who need support while working tirelessly to achieve the mission of finding treatments and one day a cure. 

How do you quantify the impacts of all of this on a family and how do you help them get through it? You CAN help. By making a gift to help us reach our goal, you are directly impacting families who need support. You are directly helping children like Cloe and Claudia. You are taking a stand for rare disease families who need people to unite with them. 

Will you stand with my family and help us reach our goal to help more families affected by Alagille Syndrome?