Nelson's Story

Kenneth’s ALGS Story

Meet Kenneth!

Kenneth came into our lives on August 05, 2011. When he was born, they quickly realized that something was not right because of his jaundice. He spent about 14 days in the NICU until we finally took him home. They continued the investigation to find out what was going on with him. After 9 months, he was diagnosed with Alagille Syndrome. When we found out about this, we felt lost because it was something we had never heard of. I started researching on the internet until I found the Alagille Syndrome Alliance at Alagille.org. We moved immediately in May 2013 to Philadelphia, from Puerto Rico, for a medical evaluation and later Kenneth was placed on the waiting list for liver transplant due to 2 femur fractures and one skull fracture. Living with Alagille involves many things for patients and parents or caregivers. In our experience, it has been very difficult, but it would have been worse if we had never had the opportunity to have information and support from the Alliance. We are so grateful to every person that has passed through our son’s life including the entire team that sees him at The Children’s Hospital of Philadelphia. They have always treated him with love and respect and have helped us take care of our son as best as possible. It is important to know that this syndrome exists and that today there are many children, adults, and young people who live one of the worst symptoms of this disease, the itching. My heart is broken when I know that there are many of our patients in the world who cannot sleep peacefully because of what that itchiness does. I thank God for the studies, advances in medicine that are making the quality of life for people with Alagille syndrome better every day. We are grateful and full of hope. 
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