And so in families where Huntington's is present, the disease looms large. It's an inherited condition. If your parent has Huntington's, then you have a fifty-fifty chance of developing it too.
Huntington's is a disease very much bound up in family ties. Would you want to know?Would you be able to live with the constant anxiety of not knowing? - Lisa Genova, novelist and neuroscientist
However, because at its core, this story is about family, resilience, and love, it is relevant to all of us.There's a simple blood test that can tell you if you carry the gene. I’m sure their story will resonate with many HD families across the world. The O’Briens were so compelling… so real! I found myself worrying with the O’Briens, crying with the O’Briens, feeling their pain and going on the same journey with them. Genova really captures the human essence of being a part of an HD family, and gives us a window into what this feels like. The other reason I found this book a riveting read is testament to Genova’s storytelling capabilities. It is one of the reasons I love this book. Genova, who holds a PhD in Neuroscience from Harvard, effortlessly educates her audience about the science and genetics behind HD, without the complexities of a clinical textbook. Is the constant anxiety of not knowing better than being confirmed gene-positive? What happens if you are gene-positive? Do you choose to marry and start a family, given the risk of passing on the gene to your own kids? It is not a decision that many of us have to consider in our early 20s, but Genova raises and explores some poignant considerations. We see the O’Brien kids, especially Katie, the baby of the family, grappling with this complex choice. Given that the faulty gene causing HD was found in 1993, ‘at-risk’ individuals can now choose to find out their gene status by taking a genetic test. We see how it affects his job in the Boston PD, and the ramifications (both positive and negative) his diagnosis has on his family. We follow Joe from his earliest symptoms, to his diagnosis, and get an insight into what living with HD is like. The difference is that Joe, like 30,000 other Americans, has HD.
The O’Briens are just another normal family, sibling rivalries and all, which make them easy to relate to. The story centers on the O’Briens – Joe O’Brien, his wife, Rosie, and their four grown children, JJ, Patrick, Meghan, and Katie – who live in Charlestown, MA.
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