Rare Diseases, Disorders, and
Conditions in YA Fiction
You know a few novels involving cancer. But do you know the ones about progeria,
superecholocation, Moebius syndrome, and hyperthymesia?
BY DANIEL KRAUS
Disease striking the tragically young has been an iron mainstay since the advent of YA fiction—in a lot of those early “problem novels,” the problem in question
was the suffering of the protagonists’ best friends (or boyfriends,
or siblings, etc.), if not the poor protags themselves.
The seismic success of John Green’s The Fault in Our Stars
(2012) injected renewed vigor into this classic story line (referred
to in some places as “sick lit”). Perhaps the crowding of the market is one reason we’ve seen a startling spike in stories involving
more unusual diseases, disorders, and conditions. It makes sense:
in some ways, being so burdened is the flip side of having special
abilities, another teen-lit mainstay. (Don’t count out middle-grade books, either; in 2016, for example, there were three books
featuring synesthesia: Sheila Grau’s The Boy with 17 Senses, Linda
Sue Park’s Forest of Wonders, and James R. Hannibal’s Lost Property Office.)
The conditions range from face blindness (Jennifer Niven’s
Holding Up the Universe, 2016, and a certain Printz favorite we
can’t mention due to spoilers); to Munchausen syndrome (C. J.
Lyons’ Broken, 2013, and Calla Devlin’s Tell Me Something Real,
2016); to being allergic to, well, everything (Nicola Yoon’s
Everything, Everything, 2015, and Robert Wilder’s Nickel, 2016).
Below are just a few recent standouts.
100 Days. By Nicole McInnes. 2016. Farrar, $17.99
(9780374302849). Gr. 9–12.
Agnes’ progeria has her aging at 10 times the normal rate, and
that only complicates the dynamics between her, best friend
Moira, and the return of Agnes’ old friend Boone. Each character has individual struggles, but it’s Agnes who stands out,
forever refusing to let her disease define her.
Althea & Oliver. By Cristina Moracho. 2014. Viking, $17.99
(9780670785391). Gr. 10–12.
Althea is ready to advance her longtime best-friend relationship with Oliver into something more, but his narcoleptic-like
condition, which causes him to suddenly sleep for weeks or even
months, prompts his moving to New York for a medical study. A
fierce, intelligent, and mature debut.
Because You’ll Never Meet Me. By Leah Thomas. 2015.
Bloomsbury, $17.99 (9781619635906). Gr. 9–12.
They are the oddest, and yet, most fitting of pen pals: Ollie, who
can see the colors and shapes of the electricity to which he is allergic,
and Moritz, who has no eyes yet can see through superecholocation.
Even though their conditions mean they can never meet, their communication illustrates the limitless potential of the page.
Kids of Appetite. By David Arnold. 2016. Viking, $18.99
(9780451470782). Gr. 9–12.
Vic, who suffers from Moebius syndrome (a neurological disorder causing facial paralysis), is taken in by an eccentric group
dedicated to helping him spread his father’s ashes. Though a murder investigation frames the story, this has more of a philosophical
bent and is meant for, as Arnold puts it, “heart-thinkers.”
The Light Fantastic. By Sarah Combs. 2016. Candlewick,
$17.99 (9780763678517). Gr. 8–11.
April’s hyperthymesia means she can vividly recall details
from every day of her life. She also fixates on certain national
tragedies—one of which seems about to occur across the country, involving her childhood friend, Lincoln. Eventually, seven
voices, united by an online forum, come together to plan a day
of school shootings. Both lyrical and tense.