THE LIFE OF RILEY

Herrera’s memoir chronicles living with a child’s terminal illness.

Born in 1969 in Butte, Montana, the author was the youngest of five children in a close family, including two brothers who were diagnosed with Spinal muscular atrophy (SMA), which is caused by recessive genes (muscular dystrophy is the umbrella term for a variety of neuromuscular diseases). When her son, Riley, was diagnosed with Duchenne muscular dystrophy (DMD) at age 4 in 1995, Herrera drew on her parents’ example to seek the best treatments, advocate for his rights, and still maintain “a safe, happy, nurtured, and respected environment for our family.” Unlike SMA, Riley’s DMD was caused by a spontaneous genetic mutation. The prognosis was dire; the author was initially told he would be dead by age 17. Tirelessly searching for experts and support, Herrera and her husband Ron connected with Parent Project Muscular Dystrophy (PPMD), an organization devoted to research and support for families affected by DMD. At age 14, Riley’s heart (which is a muscle) was attacked by “The Beast,” their nickname for DMD. Cincinnati Children’s Hospital accepted him for a heart transplant, which he received on March 30, 2007. Riley exceeded all expectations, graduating high school and college and living fully until DMD claimed his life at age 31. Herrera vividly portrays a remarkable young man who powered through difficult times with “resilience, optimism, grace and dignity, strength and fortitude.” Her own recollections, combined with reflections of others involved in Riley’s life, effectively describe how fraught negotiating the evolving research and care protocols is, along with the importance and difficulty of keeping some level of normalcy in family life. The insights of the author’s brothers, especially about their experiences with SMA and their close connection with Riley, add depth and a multigenerational aspect to the memoir. While emphasizing the power of positivity, Herrera does not shy away from honestly confronting the heartbreaking aspects of life with a child who has a terminal disease, including many levels of loss.

A moving account of a remarkable young man and his supportive family battling Duchenne muscular dystrophy.