Inside the Harker’s

Growing up, my grandmother told us she would walk into the desert to die if she found out she had Huntington’s Disease. She was a complete mad cat, loving and fearless, but she could never overcome her terror of the neurodegenerative genetic illness that claimed her father’s mind, body and life.

This attitude, adopted by the entire Harker clan, instilled a deep fear in me of one day testing positive and eventually becoming disabled. Family members at risk of inheriting the Huntington's gene chose to live in denial rather than risk testing positive.

Once we were legally old enough to be tested, my sister Neve and I made the difficult but proactive choice to discover the truth in our DNA. Facing the shadow that loomed over our family, we hoped for answers and to face the darkness front on rather than shy away from it. When both our results came back positive with a CAG repeat sequence of 42, inherited from our father it was a shock. An outcome I had never really allowed myself to truly believe possible became my reality. All of the sudden, the fear and despair of all the Harker’s sharpened to a point in my mind.

Coming to terms with this reality forced me to look deeply at my life: my values, my purpose, and how I wanted to spend my limited time.