My name is Alexandra Eaton, I am the mother of three children, grandmother of two, and also a proud board member of The Arginase 1 Deficiency Foundation.  My son Josh was diagnosed with Arginase 1 Deficiency at the age of 3.  He is now 26.  The late diagnosis of this rare disease has forever changed our lives.  There was insufficient information available and our family felt isolated, alone, and frightened.

ARG1-D has led us on a complicated journey.  It’s been overwhelming and challenging managing my son’s medical complexities.  I’ve learned to navigate through so many different and unique situations resulting in my continued thirst for knowledge.  This has given me the desire to contribute and share my experiences with all.

In time I was introduced to the UCD Community which connected me to other ARG1-D families.  We realized there were many similarities unique to ARG1-D which led to the creation of the Arginase 1 Deficiency Foundation.  As a parent, caregiver, and committed advocate for Arginase 1 Deficiency, I am looking forward to sharing my knowledge, and support to all the newly and past diagnosed patients, medical community, and fellow board members.

Never give up hope!

Sincerely,
Alexandra Eaton