For a child grappling with a parent's incurable illness and the scary possibility of inheriting it, this book offers a poignant and honest exploration of fear and resilience.
A parent might reach for this book when their teen is confronting the profound anxiety of a parent's serious, hereditary illness. Saint Vitus' Dance is the story of fourteen-year-old Melanie, whose mother is slowly deteriorating from Huntington's Disease. The story unflinchingly explores Melanie's fear and isolation as she grapples not only with her mother's decline but with the 50 percent chance that she has inherited the same incurable condition. For ages 12 to 16, this short, direct novel provides validation for complex feelings of grief, fear, and responsibility. It's a powerful tool for starting conversations about genetic illness, anticipatory grief, and finding the strength to live fully in the face of frightening uncertainty.
The book's approach to incurable, genetic illness is direct, realistic, and secular. It does not shy away from the difficult physical symptoms (uncontrolled movements, choking) and emotional toll on the family. The resolution is not a cure but a shift in perspective. It is realistic and hopeful, focusing on the protagonist's choice to embrace life and love despite an uncertain future, rather than finding out her genetic status. The topic of a parent's eventual death is handled with honesty as a process of anticipatory grief.
Ideal Reader
A teen, aged 12 to 15, who is personally affected by a hereditary, chronic, or terminal illness in their family, such as Huntington's, ALS, or early-onset Alzheimer's. It is also for a teen experiencing intense anxiety about a family member's health or their own genetic makeup, who needs to see their specific fears reflected and validated.
Parent Prep
Parents should preview scenes describing the mother’s worsening symptoms, as they are medically frank and can be distressing. The central conflict over the pros and cons of genetic testing is a significant topic. This book is best used as a conversation starter and should not be read cold; it warrants discussion with a trusted adult. A parent hears their teen say something like, "What's the point of trying in school if I'm just going to get sick like grandma?" or notices their child withdrawing and becoming fatalistic in the face of a family health crisis.
Age Experience
A younger reader (12-13) will likely connect most with the family sadness, the changing mother-daughter relationship, and the social pressure to appear 'normal'. An older teen (14-16) will more deeply understand the existential weight of Melanie's choice, the ethics of genetic testing, and the complex challenge of forging an identity separate from a potential diagnosis.
What Makes It Special
Unlike many books about general illness, this one's specific focus on a hereditary neurodegenerative disease is unique. It powerfully tackles the concept of genetic destiny and the psychological burden of a 50/50 chance. Its slim page count makes a very challenging topic accessible to reluctant readers.
Read plot summary
Fourteen-year-old Melanie's life is overshadowed by her mother's Huntington's Disease, a neurodegenerative disorder historically known as Saint Vitus' Dance. As she watches her mother's physical and mental health decline, Melanie must navigate school, friendships, and a new romance while living with the secret of her mother's illness and the crushing fear that she has a 50% chance of developing it herself. The narrative centers on her internal struggle and the ultimate decision of whether to undergo genetic testing.
This overview was generated by AI based on the book's content and reviews, and may not capture every nuance.
Discussion Prompts
1
Melanie chooses to keep her mother's illness a secret from her new boyfriend, Michael. Why do you think she made that choice? What might have happened if she had told him sooner?
2
At the end of the story, Melanie decides not to get tested for the Huntington's gene. Do you think this was a brave decision or a fearful one? What would you do in her position?
3
Melanie's dad tries to handle everything himself and doesn't talk to her much about her mom's illness. How did his silence affect Melanie? What could he have done differently to support her?
4
The book is named for an old term for Huntington's Disease, 'Saint Vitus' Dance'. How does understanding the history and name of the disease impact Melanie's feelings about it?
