THE FIGHT FOR MY NEPHEW'S LIFE WITH SPINA BIFIDA

In this debut memoir, a woman recounts becoming a caretaker for her nephew, whose condition requires constant medical attention.

Akok wasn’t there when her nephew was born in Nairobi, Kenya, as she had relocated to the United States years before. When Little Deng was a year and a half old, his aunt learned the shocking news that he had myelomeningocele, the severest form of spina bifida, a congenital disorder. At the author’s suggestion, the boy moved to her Salt Lake City apartment to receive medical treatment in America. Little Deng needed frequent medical care, as doctors further diagnosed him with hydrocephalus (fluid buildup in the brain) and clubfoot. Life was challenging for Akok and her nephew. He used a walker but needed a wheelchair for longer trips. As the author owned a compact car, the wheelchair presented an unexpected complication. Back in Nairobi, Little Deng’s mother made little effort to contact her son, an apparent indifference the boy picked up on. But he remained positive; his love of sports soon led to his joining a local wheelchair basketball program and even meeting his favorite player on the Utah Jazz. Akok’s account is sometimes heartbreaking. For example, when she first began catheterizing Little Deng every four hours, he would cry in pain and plead with her to stop. But most of the book is buoyant: From the beginning, the author treated the boy as her own child. Despite obstacles—such as folding and unfolding a wheelchair in the blistering cold winter—she refused to give up. Moreover, readers will find Little Deng’s upbeat attitude infectious. One day at school, a fall from his walker rendered him unconscious. When he awoke, he told his visibly concerned aunt: “Suzie you worried a lot, I am fine.” The author aptly describes medical conditions and procedures. Unfortunately, numerous grammatical errors crop up throughout the short memoir (for example, “Remove the braces that is causing pressure”). But they prove to be minor distractions.

A sublime account of caring for a child with spina bifida.