A personal look at Williams syndrome, “a genetic fluke that strip[s] one in every 10,000 people of the inherent wariness, skepticism, and inhibition that [are] hardwired into the rest of us.”
In her debut, former Houston Chronicle reporter Latson combines the moving story of Gayle and her son Eli, a child with Williams, with scientific data on this rare genetic disorder. Characterized by an elfish appearance, sleeplessness, heart murmurs, sensitivity to sound, and cognitive and developmental difficulties, the biggest issue with Williams syndrome is that people who have it are overly friendly, too trusting, and unconditionally loving toward everyone, including strangers. For Gayle, this meant she was not able to let Eli out of her sight, for she never knew when he would head toward someone with open arms, wanting a hug or wanting to give a hug. Approximately 30,000 Americans have Williams syndrome, making it less common than Down syndrome or autism, but its effects on the parents and children are no less profound and life-changing. Latson shares Gayle’s story from the moments of Eli’s diagnosis and into his teen years. As a single mother, she struggles with raising Eli, trying to navigate the health care system, work, and finding places where Eli can be himself without causing disruptions. Attending a special camp helped Eli make new friends, but Gayle was unable to relax and enjoy herself. When Eli entered puberty, Gayle faced further obstacles, as Eli openly experienced sexual desire but was not fully aware of what that meant physically. Latson tells the story with great sympathy and eloquence, giving voice to the frustration, anguish, and despair a parent feels when their child struggles with a rare disorder.
A well-researched, perceptive exploration of a rare genetic disorder seen through the eyes of a mother and son.