A Beautiful Destination & Its Detours

As a young boy, I used to lie in bed and play in my room imagining that I was a hero or that I had accomplished something great.

Maybe everybody has had dreams like this. In my daydream, I was always in some sort of war or great battle, probably because I looked up to men and women in uniform. I loved hearing their stories or reading about a historical event where someone had succeeded in some great challenge against overwhelming odds.

What I didn’t realize then was that we don’t get to pick what our great challenge will be, or when we will face it. It’s for these reasons that challenges are challenges. When my great challenge came, I tripped and fell face first. My perfect journey took an extensive detour.

My daughter has an ultrarare disease. I became an RN to care for her.

Kelly Heger’s daughter Jillian, now 26, was the fourth child in the world to be diagnosed with the ultra-rare condition aromatic l-amino acid decarboxylase (AADC) deficiency. There are fewer than 150 cases in the world. With an AADC deficiency, the brain can’t properly create neurotransmitters, dopamine and serotonin, which can lead to low muscle tone, movement disorders, developmental delays and problems with the nervous system, such as inability to regulate temperature.

As Heger, who lives in Bridgewater, Massachusetts, navigated the medical system, trying to find answers about Jillian’s condition, she realized she needed more background and attended nursing school to earn her RN. Now 54, Heger has become an advocate for AADC and founded the AADC Family Network, which connects families that have loved ones with the condition.



This interview has been edited and condensed for clarity.