A mother helps her daughter cope with a rare disease in this memoir.
Debut author Gould describes her yearslong quest to help her adopted daughter, Jill, who was afflicted with a rare genetic disorder called acute intermittent porphyria starting at age 11. Its symptoms include severe diarrhea, convulsions, and fainting; this caused problems at Jill’s Connecticut school, including frequent absences and trips to the hospital as well as bullying by other students. School officials were largely unsympathetic, the author says, even accusing Jill of being an “attention-seeking faker.” Gould also says that some doctors initially misdiagnosed the affliction, including one who decided that the girl suffered from bipolar disorder. After a genetic test linked Jill to AIP, she received infusions of a blood factor called heme, which seemed to help. But problems persisted, especially at school, leading Gould to believe that “a building filled with toxic chemicals and toxic people”—cleaners, wet erasers, and stress-inducing bullies—were triggering her daughter’s attacks. Tutoring and transfers to other schools didn’t solve the problem, however, although sometimes Jill did improve a bit. By the end of this sad tale, though, Jill is a suicidal heroin addict. In addition to her daughter’s tragic story, Gould also presents some AIP research and websites as well as some of Jill’s own first-person observations. Overall, this book offers a troubling account, and its broadest contribution is how it highlights the difficulties that people with unusual problems face in the American public school and health care systems. Although the author doesn’t prove that toxins at school triggered her daughter’s attacks, she makes some credible assertions. Unfortunately, she bogs the narrative down with too much description of bullying and “ridiculous middle school drama,” and her fondness for acronyms is distracting: “the PPT to set the IEP would be held at KPS.” The prose shows occasional flair, as when Gould describes when a baby Jill “plopped forward like a folded taco.” However, it sometimes suffers from clichés and repetition; for example, the author’s “head bells” always seem to be “clanging” or “jangling,” and people read one another “the riot act” more than once.
Despite its flaws, this book may be useful for families affected by porphyria and may interest others frustrated by flawed education and medical systems in the United States.