I started this blog at 29 years old, as a new mom plunged into the world of rare disease after my son, Jacob, was diagnosed with citrullinemia. This blog covers the first year or so of Jacob’s life and the experience that we had.
Living with citrullinemia and other Urea Cycle Disorders is different for everyone. This is about Jacob’s journey, and it’s my perspective. Your story is likely different. But maybe reading this can give you encouragement.
Our lives have changed dramatically in the years since Jacob was born. But what hasn’t changed is our commitment to fighting this disease and giving Jacob a happy, healthy life unhindered by his ASS1 gene.
Feel free to reach out to me any time at email@example.com with questions or just to chat.