Author Lisa Genova is a neuroscientist who explores the mysteries of the brain in novels such as Still Alice and Left Neglected. In her newest work, Inside the O’Briens, she writes about the harrowing impact of Huntington’s disease (HD), explaining not just the physical symptoms and deterioration but what a diagnosis of HD means to a family.

The O’Briens are a large, working class Irish Catholic family who live and breathe the essence of Charlestown, their Boston neighborhood. They know everyone; everyone knows them. They are devoted to the Red Sox and Bruins, they give back to their community, and they raise their kids to be good Townies too. Parents Joe and Rosie married as teenagers. Now in their forties, they have a happy marriage, and enjoy the company of their four children, who — rain or shine — never miss Sunday dinner.

Joe has been a cop for 25 years. Their eldest son JJ is a firefighter who lives in one unit of their triplex building with his wife Colleen. Their second son, Patrick, tends bar and lives with Joe and Rosie. Daughters Meghan and Katie share the third unit; Meghan is a dancer with the Boston Ballet and Katie is a yoga instructor. The family is loud and boisterous, good-humored, and utterly enmeshed in each others’ lives.

And then things start to go wrong. Joe’s temper is more volatile than it used to be. He drops things more and more frequently. He’s having a hard time finishing reports, and keeps moving in ways that he doesn’t mean to. When his symptoms can no longer be ignored, he reluctantly goes to the doctor, and after testing and genetic counseling, he’s given a diagnosis no one has ever even heard of: Huntington’s disease.

HD is a neurodegenerative disease that’s unrelenting and cruel: If you test positive for the HD gene, you will get the disease — and your children have a 50/50 chance of inheriting it from you. There is no treatment and no cure. HD patients lose control of their movements, have trouble with coordination and with modulating their emotions, and eventually cannot speak, swallow, or move on their own. Symptoms typically appear in the 30s or 40s, and death follows within 10 to 20 years.

As bad as the news is for Joe, there are still more devastating implications: What about his children? Each has a 50% chance of having the HD gene. All are currently healthy, so the question is, do they want to know? There’s nothing iffy about being gene positive; it means that you definitely will have the disease. Each of Joe’s children must make the decision about testing, and each has his or her own set of fears to confront in making that life-altering decision.

Inside the O’Briens is a sad and beautiful look at the trauma and turmoil caused by fatal illness. The O’Briens are a blessedly large and loving family, but even so, there’s nothing easy about what they must endure. Joe has his pride and his sense of self-worth wrapped up in his identity as a Boston cop. If he has to give up his badge and gun, who will he be? What does it mean for Rosie if her husband becomes an invalid in his 40s? How can Rosie and Joe deal not just with his illness, but with knowing that their children may face the exact same fate?

Meanwhile, the implications for each O’Brien child are all different but equally awful: JJ and Colleen are expecting their first child. If JJ is gene positive, what does it mean for the baby? Meghan is a gifted dancer. How can she face losing her her grace and ability? Patrick is the biggest enigma in the book, and the least developed. He’s angry and volatile throughout much of the story, and it’s hard to get a sense of what he is really about. Are his fights and unpredictability just personality traits, or are they warning signs of an early onset of HD?

Of all of the O’Brien children, we get to know Katie, the youngest, best of all. We switch between Joe and Katie’s viewpoints throughout the book and see much of the unfolding drama through her eyes. Katie is practically paralyzed by fear of HD and what it may mean for her future. She spends much of the book torn between wanting to know and not wanting to know. She’s in love and on the verge of a new life with a wonderful man who loves her, but can she move forward with him if she’s gene positive? Is it fair to focus on her future when her father needs her? Every time Katie teaches a yoga class and feels a pose wobble, she launches into anxiety over whether the wobble is an early symptom — but will she feel better knowing, or is it better to hold onto a hope of escaping HD for as long as possible?

I realize that this review is full of questions, and that’s because the book raises so very many of them. From this book, I learned that most people at risk for HD choose not to undergo genetic testing unless and until they become symptomatic. There are 37,000 Huntington’s patients right now, and very little progress has been made in treating the disease other than finding ways to ameliorate some of the symptoms through medication and physical therapy. Lisa Genova includes a call to action at the end of the book, and her website (http://lisagenova.com/hdsa/) encourages readers to donate funds to support Huntington’s Disease research.

Reading Inside the O’Briens is fascinating and moving. I loved the O’Brien family — their loyalty, their faith in one another, their sense of goodness and determination. Nothing is sugar-coated — this disease is terrible, and the family members suffer tremendously. I can’t even imagine how awful it must be to watch a parent’s deterioration and the pain that causes, while at the same time knowing that you could be witnessing your own future as well.

The struggles of Joe and Rosie and their children are vivid and sympathetic, and yet the book does not bog down in tragedy. True Boston pride shines through, and the family’s humor, faith, and sense of belonging are all key components in how they cope in the face of disaster.

Perhaps the only part of the story that I felt should have been more fleshed out relates to Joe figuring out how to end his career and manage his finances so that Rosie wouldn’t be left with nothing. The legal and financial effects of a terminal illness are huge, and while I realize that the point of the story is the emotional impact on the family, I did feel that this side of the situation should have been explored further. This is my only quibble with this book, and in the grand scheme of things, it’s minor.

Inside the O’Briens is a deeply affecting look at a horrible disease, but it’s also a beautiful portrayal of the strength, caring, and love of a very special family. Lisa Genova does a wonderful job of bringing us into the O’Briens’ lives and making us care about them, while at the same time imparting vital information about a little-known disease. Highly recommended.

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The details:

Title: Inside the O’Briens
Author: Lisa Genova
Publisher: Gallery Books
Publication date: April 7, 2015
Length: 352 pages
Genre: Contemporary fiction
Source: Review copy courtesy of Gallery Books via NetGalley