Saga of a boy who was genetically nice

When Jennifer Latson first met 12-year-old Eli in the winter of 2011, his “greeting was comically hyperbolic,” but he “radiated earnest warmth.” Eli has Williams syndrome, a rare “genetic fluke that strip[s] one in every 10,000 people of the inherent wariness, skepticism, and inhibition . . . hardwired into the rest of us.”

In her first book, the former Houston Chronicle reporter traces the three years she spent shadowing Eli and his mother, Gayle (both names changed). The narrative is alternately moving and heartbreaking, as Latson walks readers through the tumultuous obstacles that Eli and Gayle face daily. Throughout, Latson demonstrates a sharp, journalistic eye for telling detail and the ability to capture poignant moments without resorting to cliché or overly sappy writing.

Since “[t]hey have the social drive but not the cognitive ability to use it effectively,” people with Williams (about 30,000 in the United States) have enormous difficulty navigating social situations and, especially for children, making genuine friends. For Eli, a “friend was simply someone he’d interacted joyfully with — a definition that encompassed nearly everyone.” In fact, he “considered every social interaction worthwhile, regardless of the outcome.”

And it’s not just social issues that cause complications; Williams also brings physical problems as well, including gastrointestinal distress, joint and muscle problems, obesity, vision and spatial issues. Most also experience some learning and cognitive challenges. The majority of Williams patients can’t drive a car, and many require care for their entire lives.

For Gayle, the diagnosis was devastating; as a single mother, it was a particularly daunting challenge. Her own mother has been an invaluable resource of support and care, but each day is a constant struggle between letting Eli develop a sense of independence while also protecting him from bullying and exploitation (over 90 percent of people with developmental disabilities suffer at least one instance of sexual abuse in their lives). A Williams Facebook group has offered vital information as well, with fellow parents connecting and sharing their stories and methods for navigating the unpredictable peaks and valleys.

As any mother or father can attest, puberty is one of the most fraught times of parenthood, and it’s infinitely more so for people with Williams. Latson vividly portrays this struggle through her portraits of Eli at school and at a camp designed for children and adolescents with Williams. As she writes, “pumping adolescent hormones into what was essentially a five-year-old’s brain was a recipe for trouble.” Imagine the “surliness of a typical teen mixed with the irrational volatility of a two-year-old.”

Refreshingly, Latson does not sugarcoat Gayle’s very real mental and emotional battles as she tries to make her son’s life as fulfilling as possible, and readers will be hard pressed not to empathize with Gayle’s attendant fight to maintain some sense of self. “Gayle had never noticed her identity slipping away,” writes Latson, who goes on to a broader discussion of the consequences of caregiving, which often requires that mothers sacrifice “retirement dreams and trad[e] empty nest syndrome for eternal motherhood.” Above all, what stands out is Gayle’s unconditional love and devotion for her son.

As we watch Eli grow — often haltingly, with steps forward followed by frequent regressions — we also see how his “proclivity for storytelling” becomes a “valuable tool to help [him] manage the syndrome’s disabling effects.” Latson delves into how others might benefit from emulating some of the disorder’s positive elements — e.g., less separation anxiety, no racial bias — and she interweaves throughout Eli’s story sufficiently detailed explanations of the science involved with Williams and other similar genetic disorders.

Near the end, in one of the most heartwarming chapters, the author relates a discussion from Eli’s eighth-grade science class on genetics, in which the students displayed great compassion and “sober curiosity,” asking thoughtful questions and showing genuine interest in Eli as a unique individual. Ultimately, “his sincere warmth, antithetical as it was to coolness, had upended the normal rules of popularity, making him a nearly universally beloved figure in his class.” In this balanced, readable work, Latson effectively and sympathetically captures Eli’s essential humanity and opens a clear window on a little-understood genetic disorder.

THE BOY WHO LOVED TOO MUCH:

A True Story of Pathological Friendliness

By Jennifer Latson

Simon and Schuster, 290 pp., $26