My daughter presented with symptoms at age 9 in 2012. She continued with major symptoms, but no answers as to a diagnosis, until last year in 2018 when she became a patient at St. Jude, we received genetic testing, and were finally given answers. We found out she has a rare form of PI. We also learned I am the carrier for this disease with the lesser of the symptoms, and my older son also has this disease. We have traveled to the National Institutes of Health in Maryland, and now to Texas Children’s in Houston for this disease. She is seen primarily at St. Jude in Memphis.