“The Alagille Syndrome Alliance financial assistance program literally brought me to tears. Tears of joy, that is. Feeling the caring and genuine concern from people who can relate is a tremendous relief. What an amazing connection the Alliance has provided to my son and me. Parenting a child with a chronic illness takes more resources. The emotional struggles with worry and stress about my son’s health and well-being has been overwhelming. Very often, a community of relatives and friends cannot understand the family dynamic that includes a child with a life threatening illness. This has caused isolation for my son and me. Holding it together financially has been close to impossible and shameful for falling short. We’ve learned to make due. When our oven broke, we switched to using a counter top oven. Our water bill was seriously overdue. Our old car that we rely on for medical appointments needed a new radiator. A conversation with Roberta at the ALGSA quickly put me at ease, lifting the feeling of financial shame and empowering me. This is the most uplifting connection I have made since my son was diagnosed over 10 years ago. The Alagille Syndrome Alliance embraced our needs and the response from the ALGSA for assistance is the most fullfilling experience that I’ve had in many years.”
Mom to ALGS young adult
Massachusetts, USA
