His mother, Sue, had died the summer before from complications of Huntington disease, a devastatingly progressive and ultimately fatal neurodegenerative disorder. We learned from the genetic counselor that although he inherited an expanded gene, John has fewer gene repeats than his mother. “It’s a girl!” I heard John say, “It’s Susannah.” We named our daughter after his mother. It’s so tempting to succumb to the fear of that loss before people with Huntington disease are even gone, before their first tremor appears, before their first stumble. Oh Susannah, she has been our family’s medicine.

Source: New York Times November 03, 2023 15:02 UTC