Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare fatal pediatric disorder, over 26 years ago. Kelly was determined to understand the complicated medical language used by her daughter’s doctors and to play a pivotal role in the round-the-clock medical care Jillian requires.

In the video below, Kelly and her husband Bruce share their family’s AADCd story, giving insights into their daughter’s diagnosis journey, how they always ensure Jillian is included in the precious moments that make up family life and share some words of wisdom, motivation and inspiration for other AADCd families.