Publisher: Simon & Schuster
Damon Weber was born with a congenital heart defect that required numerous surgeries prior to his first birthday. In the years following this early scare Damon’s parents, Doron and Shealagh, were able to breathe sighs of relief as their baby grew to be an active, spirited child with few major health problems. But by the time Damon is about to reach adolescence, it becomes clear that he is not growing at the rate of his classmates and his usual vibrancy has dimmed.
The Weber family soon discovers that Damon has a rare disorder known as PLE, believed to be a result of the surgeries from his infancy. In an effort to avoid taking the drastic step toward a heart transplant, the family decides to seek alternate treatments with varied results. Throughout this time, Doron details Damon’s efforts to maintain a sense of teenage normalcy, while also exploring his love for acting in numerous plays. Though his initial casting is likely aided by his father’s high ranking connections, the praise Damon receives while filming his appearance on HBO’s Deadwood is through his talent alone.
There comes a point, however, when it is clear that Damon’s condition is worsening. Under the fierce encouragement of doctors, none of whom are willing to give up the outcome data for their surgeries, it is decided that a heart transplant is the last remaining option. What follows is a gut-wrenching tour through the red tape of the medical bureaucracy, which often seems to have the patient at the bottom of its list.
I was blown away by how drastically different the writing in the last chapter of the book felt. While the shift could be attributed to any number of things, when looking back and trying to pinpoint the change, I noticed the lack of dialogue in the final pages. Rather than attempting to piece together conversations, which at times came across too veneered, Doron focuses on his thoughts and the emotions of his unimaginable loss. This is the strongest point in the memoir by far and, while I’m sure it would have been a much more difficult book to write, I think editing some of the recalled dialogue might have improved the overall tone.
Still, the Weber family’s story is well worth reading, both as a sobering peek into the disastrous web of the American healthcare system and the strength it can take to navigate it.