A high school valedictorian with big plans to flee her small town gets a degenerative genetic disease.
Two months ago, 18-year-old Sammie was diagnosed with Niemann-Pick Type C. People with NPC usually die as children; it’s extremely rare for symptoms not to appear until adolescence, so Sammie’s timeline is unknown. NPC brings dementia and systemic physical deterioration—as Sammie edits Wikipedia to say, “Your shit is fucked.” To create a bulwark against memory loss, she documents her life on a laptop she carries everywhere, addressing it to Future Sam, who she still hopes can leave Vermont behind for NYU. Her narrative voice is sardonic, distinctive, wildly intelligent, and sometimes hilarious: her parents’ church is “angular…and white, like most of its parishioners” (including her family, presumably). Sammie’s first debacle is losing a national debate tournament due to a dementia episode smack in the middle. Fluctuations in cognitive function show in her narrative voice. She needs tooth-brushing reminder notes; she regresses in age and doesn’t recognize her youngest sister. At one point she fills three pages typing “die.” Yet over this summer that should have been pre-college, Sammie experiences romance, reconnects with a childhood friend and with her bucolic mountainside, and writes minibios about her young siblings that extend to their adulthoods, giving them the long futures that she won’t have. Readers will feel her mind and heart shifting with the illness.
Indelible.
(Fiction. 14 & up)