One Strong Girl

Book excerpt: A mother’s award–winning account of what it’s like to lose a daughter to a rare debilitating disease. One Strong Girl is a bold description of what it means to deal with deep sorrow and still find balance and beauty in an age steeped in the denial of death. At ten, India climbed the highest on the rope at gymnastics, yet by sixteen was so weak she was unable to even dress herself. The narrative follows the six-year fight for answers from the medical community. Finally, after the genetic testing of India’s DNA, it was discovered there were two mutations on her ASAH1 gene, a deadly combination. Today her cells are alive in a research lab at the University of Ottawa. This is a legacy that cuts both ways, a point of pride and pain. One Strong Girl is a story of what it’s like to outlive an only child. It describes the intensity of loving a dying child and most importantly, the joy to be found, even amidst the sorrow.