Ten Books featuring Characters with a Genetic Condition by Yolanda Ridge
Even though I’m a science geek with a master’s degree in genetics, I don’t really like to read non-fiction. Knowing I’m not alone, I have compiled a list of fiction titles that introduce young readers to the principles of genetics through a character who has a condition caused by a single gene or chromosomal change.
Wonder by R.J. Palacio
Auggie has an autosomal dominant condition called mandibulofacial dysostosis or Treacher Collins Syndrome. It is most commonly caused by a new gene mutation, which is why neither of Auggie’s parents are affected. But if Auggie were to go on to have children (more Wonder spinoffs – yes, please!) they would each have a fifty percent chance of inheriting the same syndrome. Instead of going into detail about what has caused Auggie’s condition, Palacio focuses on the affect it has on him and those around him- the perfect jumping off point to discuss human genetics and health in addition to bullying and acceptance.
We Are Giants by Amber Lee Dodd
Like Wonder, this title deals with a condition usually caused by a new dominant mutation but in We are Giants it’s the main character’s mother who is affected with a form of dwarfism. The way nine-year-old Sydney sees her mom’s condition is refreshing – she wants to stay small, describes her grandparents as coming from a long line of boring people (meaning they were a perfectly average size and shape for adults) and describe average-height people who “stop and stare or shout stupid things” as trolls. It is impossible not to cheer for Sydney as she reflects on the death of her dad, deals with the growth of her older sister and provides insight into the prejudice and practical challenges her mom faces in her day-to-day life.
Mia Lee is Wheeling Through Middle School by Melissa and Eva Shang
I love the story behind this story almost as much as the book itself. When sisters Melissa and Eva failed to get American Doll to make a Girl of the Year with a disability (despite getting over 14,000 signatures on their Change.org petition), they started a Kickstarter campaign to publish a book about a girl with Charco-Marie-Tooth disease, an autosomal dominant form of muscular dystrophy. Mia Lee, who has the same condition as Melissa, is as determined as her co-creators in her quest to become president of the video production club and take down the school bullies.
Double Helix by Nancy Werlin
If you want to immerse a young adult in genetics, this is the book. Not only is Eli dealing with his mom being in a care home because of Huntington’s disease, now that he’s eighteen he has to decide if he wants genetic testing to determine whether he will be affected too. Double Helix covers the emotional, practical and ethical elements of predictive testing while also treating readers to a story that includes romance, intrigue, and the science fiction potential of genetic engineering.
Born that Way by Susan Ketchen
If you want to introduce a horse fanatic to genetic concepts, this series is the perfect way to do it. In the first book, Sylvia (who describes herself as a 14-year-old stuck inside an 8-year-old’s body) is diagnosed with Turner’s Syndrome. The story doesn’t really go into detail about the cause of Turner’s Syndrome, which occurs in females who only inherit one X chromosome, but it does a great job of showing how the condition can affect an adolescent girl who just happens to love horses.
Pack of Dorks by Beth Vrabel
Because Down Syndrome is the most common chromosomal disorder, it is more frequently found in fiction than any other genetic condition. My current middle grade favorite tells the story of fourth grader Lucy as she deals with changing expectations and friendships at school while her home life is turned upside down when her baby sister is born “different.” I love how Lucy takes on the role of big sister, refusing to see “Molly Lump” as anything other than her beautiful baby sister.
Akata Witch by Nnedi Okorafor
As with all these titles, Akata Witch is about more than a character with albinism. When her family returns to Nigeria after years of living in the States, thirteen-year-old Sunny is referred to as “akata” – a derogatory term for foreign-born black people – by her classmates. Worse, she’s a called a “stupid, pale-faced, akata witch.” But when she finds out she has magical abilities things start to change. Inheritance of the Leopard Spirit is discussed more than the genetics of albinism but the message that one should embrace their differences rather than hiding from them is well delivered.
House of Robots by James Patterson
Severe Combined Immune Deficiency is a rare autosomal recessive condition that receives a lot of attention thanks to popular culture’s depiction of “the bubble boy.” This commercial middle grade title offers a more balanced and realistic depiction of the condition through the main character’s sister, Maddie. The link to robots not only has kid appeal, their germ-free nature makes a lot of sense.
No One Dies in the Garden of Syn by Michael Seidelman
I have no doubt that reading about Kara, a 16-year-old with cystic fibrosis, in A Time to Die by Lurlene McDaniel influenced my career as a genetic counselor. Modern teens are more likely to dive into The Garden of Syn, a new YA fantasy series. Even though Syn stumbles into an alternate world where illness and death don’t exist in book one, her struggles with cystic fibrosis are well portrayed and refreshingly realistic.
Inside Hudson Pickle by Yolanda Ridge
In my newest middle grade novel, Hudson’s uncle receives a diagnosis of Alpha-1-Antitrypsin deficiency. Because Hudson has asthma and the family tends to keep secrets, Hudson assumes he has the condition as well. Although it is not the focus of the book, there is a scene where a genetic counselor explains autosomal recessive inheritance.
Yolanda Ridge is the author of Trouble in the Trees and Road Block, middle grade novels about a feisty 11-year-old who fights a tree climbing bylaw and the development of a highway through her grandmother’s farmland. Yolanda’s third book, Inside Hudson Pickle, follows 13-year-old Hudson as he tries to make the school basketball team while dealing with asthma, changing friendships, and family secrets. Yolanda lives in the mountains of British Columbia where she likes to bike and ski with her family.