The Vanishing Family

 

The Vanishing Family by Robert Kolker
9/29/26; 368 pages
Knopf Doubleday 

The Vanishing Family by Robert Kolker is a very highly recommended intimate family drama as it presents an account of a family's experiences with a hereditary illness alternating with a medical detective/research story. This represents exceptional nonfiction.

Journalist Robert Kolker follows a family with nine siblings in Pleasant Hills, Pennsylvania. When their mother, Jean, began to change into a different person while in her forties, the youngest child, Barb, was the only one still at home to witness the change in her mother as she began drinking, her personality changed, and she became withdrawn, neglectful, and uncaring. This begins the realization that something is wrong. Then some of their siblings begin to fall into the same pattern while still young, in their middle age, while another sibling, Sue, devotes her life to caring for the inflicted. The support among family members is admirable.

This is a very intimate and heartbreaking story following a real family as they learn there is a fifty percent chance they will also succumb to the genetic disorder. Koler follows the journey of the family while five of the nine siblings are eventually diagnosed, as well as, later, some of their children. Alongside the very personal story, Kolker also follows the scientific research into dementia. There is a family tree at the opening of the novel (no last names and some first names are changed) to help you follow their story. Additionally, Notes and a Bibliography are included at the end of the text.

It is determined that the family has a rare inherited form of FTD, frontotemporal dementia, a devastating neurodegenerative disorder that "attacks the part of the brain responsible for planning, organizing, expressing language, understanding social cues, and exercising judgment.” The genetic mutation, V337M, has a fifty percent chance of being passed on to progeny. Those inflicted gradually have their personality, judgment, and language erode. It is thought that this family’s flawed genetic code and rare form of FTD might lead to a breakthrough in the prevention and treatment of all dementia, including Alzheimer’s disease. There is a discussion how gene-editing (CRISPR) and IVF genetic screening that may offer hope, but this also brings up ethical questions. 

One of the big questions family members face as others succumb to FTD, is "Do I get tested? Do I want to know?" This is an age of genetic prognostication, of noting and discovering future biomarkers of illness, but do you want to know? FTD is emotionally devastating for those around you, as you become someone they don't know. For many people, as you are giving your family's medical history, you are listing off a series of symptoms and illnesses without much thought, but with some diseases, like dementia, it is different, as it is for anything with serious repercussions that can be passed on genetically to your children. Kolker handles both the deeply emotional and personal account and the scientific research background equally well.

The Vanishing Family is an excellent choice for everyone who appreciates a well written and considered account of a family and a devastating genetic disorder. as well as those who read Kolker's book Hidden Valley Road. Thanks to Knopf Doubleday for providing me with an advance reader's copy via NetGalley. My review is voluntary and expresses my honest opinion.