The death of a child is so tragic and sad that many people would never touch it as a topic to discuss. But for some parents, ignorance is not an option. When a parent hears the word “cancer” or “terminal” from a doctor, they are forced to confront a potential reality of letting their child go, or at least prepare them for months of difficult treatment.

Michael and Kathy Spellman’s daughter Abigail was diagnosed with two genetic disorders when she was a toddler. Abigail’s condition required constant care from Michael, Kathy, and their older daughter, Madeline, who her parents call “the unsung hero” and “wise beyond her years.”

The three of them did all they could to celebrate Abigail during life, adjusting to a new set of obstacles that came when Abigail got a lung disease at age 10.

Abigail died in 2014. Here’s the story of her life, as told by her parents.