“I felt less alone after researching and writing this book,” the author asserts, and the same will certainly be true for...
Hernandez-Storr’s debut deftly chronicles the advancement of scientific knowledge about Prader-Willi syndrome and its effects on families.
The author’s daughter was diagnosed with Prader-Willi syndrome at Cedars-Sinai Hospital in Los Angeles in 2002. Hernandez-Storr delves into the history of the condition and wonders whether it’s “a special hell for families.” Obesity and behavioral problems are two main challenges associated with PWS. Children with the condition are short, “floppy,” and notably overweight from age 2; boys also have underdeveloped testes. Most eventually have to be institutionalized. In this dynamic, journalistic account, Hernandez-Storr surveys the major events in the discovery of PWS, which was named after the two Zurich children’s hospital doctors, Andrea Prader and Heinrich Willi, who published a paper about it in 1956. Research eventually revealed either a microdeletion on chromosome 15 or two copies of chromosome 15 from the mother (an example of uniparental disomy) as the ultimate cause. The book handily alternates this layman’s history of the science of PWS with some case studies of families heavily involved in the Prader-Willi Syndrome Association. For instance, Shirley Neason, whose son Daniel had PWS and died at 14, was a founding member of PWSA and edited its newsletter, The Gathered View, from the mid-1970s. PWS patient Curtis Deterling’s progress gives an intimate view of the condition’s typical course. He struggled to follow directions at traditional schools and was later moved to various live-in facilities for people with developmental disabilities. The young man, however, was able to temporarily hold down a job and have a girlfriend. Although the book might seem to hold only niche appeal, the sense of genetic mystery is relevant to any disease’s evolution. In places, Hernandez-Storr gets too bogged down in PWSA conferences and leadership changes; better to avoid this more parochial material and maintain a focus on the universally applicable aspects of the syndrome—how it affects patients and families.
“I felt less alone after researching and writing this book,” the author asserts, and the same will certainly be true for readers affected by PWS.Pub Date: N/A
ISBN: N/A
Page Count: -
Publisher: Dog Ear Publisher
Review Posted Online: Sept. 17, 2018
Review Program: Kirkus Indie
Dogged original research and superb narrative skills come together in this gripping account of pitiless evil.
Greed, depravity, and serial murder in 1920s Oklahoma.
During that time, enrolled members of the Osage Indian nation were among the wealthiest people per capita in the world. The rich oil fields beneath their reservation brought millions of dollars into the tribe annually, distributed to tribal members holding "headrights" that could not be bought or sold but only inherited. This vast wealth attracted the attention of unscrupulous whites who found ways to divert it to themselves by marrying Osage women or by having Osage declared legally incompetent so the whites could fleece them through the administration of their estates. For some, however, these deceptive tactics were not enough, and a plague of violent death—by shooting, poison, orchestrated automobile accident, and bombing—began to decimate the Osage in what they came to call the "Reign of Terror." Corrupt and incompetent law enforcement and judicial systems ensured that the perpetrators were never found or punished until the young J. Edgar Hoover saw cracking these cases as a means of burnishing the reputation of the newly professionalized FBI. Bestselling New Yorker staff writer Grann (The Devil and Sherlock Holmes: Tales of Murder, Madness, and Obsession, 2010, etc.) follows Special Agent Tom White and his assistants as they track the killers of one extended Osage family through a closed local culture of greed, bigotry, and lies in pursuit of protection for the survivors and justice for the dead. But he doesn't stop there; relying almost entirely on primary and unpublished sources, the author goes on to expose a web of conspiracy and corruption that extended far wider than even the FBI ever suspected. This page-turner surges forward with the pacing of a true-crime thriller, elevated by Grann's crisp and evocative prose and enhanced by dozens of period photographs.
Dogged original research and superb narrative skills come together in this gripping account of pitiless evil.Pub Date: April 18, 2017
ISBN: 978-0-385-53424-6
Page Count: 352
Publisher: Doubleday
Review Posted Online: Feb. 1, 2017
Kirkus Reviews Issue: Feb. 15, 2017
BOOK TO SCREEN
BOOK TO SCREEN
BOOK TO SCREEN
This moving, potent testament might have been titled “Black Lives Matter.” Or: “An American Tragedy.”
The powerful story of a father’s past and a son’s future.
Atlantic senior writer Coates (The Beautiful Struggle: A Father, Two Sons, and an Unlikely Road to Manhood, 2008) offers this eloquent memoir as a letter to his teenage son, bearing witness to his own experiences and conveying passionate hopes for his son’s life. “I am wounded,” he writes. “I am marked by old codes, which shielded me in one world and then chained me in the next.” Coates grew up in the tough neighborhood of West Baltimore, beaten into obedience by his father. “I was a capable boy, intelligent and well-liked,” he remembers, “but powerfully afraid.” His life changed dramatically at Howard University, where his father taught and from which several siblings graduated. Howard, he writes, “had always been one of the most critical gathering posts for black people.” He calls it The Mecca, and its faculty and his fellow students expanded his horizons, helping him to understand “that the black world was its own thing, more than a photo-negative of the people who believe they are white.” Coates refers repeatedly to whites’ insistence on their exclusive racial identity; he realizes now “that nothing so essentialist as race” divides people, but rather “the actual injury done by people intent on naming us, intent on believing that what they have named matters more than anything we could ever actually do.” After he married, the author’s world widened again in New York, and later in Paris, where he finally felt extricated from white America’s exploitative, consumerist dreams. He came to understand that “race” does not fully explain “the breach between the world and me,” yet race exerts a crucial force, and young blacks like his son are vulnerable and endangered by “majoritarian bandits.” Coates desperately wants his son to be able to live “apart from fear—even apart from me.”
This moving, potent testament might have been titled “Black Lives Matter.” Or: “An American Tragedy.”Pub Date: July 8, 2015
ISBN: 978-0-8129-9354-7
Page Count: 176
Publisher: Spiegel & Grau
Review Posted Online: May 5, 2015
Kirkus Reviews Issue: July 1, 2015
BOOK REVIEW
BOOK REVIEW
SEEN & HEARD
BOOK TO SCREEN
BOOK TO SCREEN
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