One summer day in 1968, a young American woman received a phone call while vacationing in France. It was her father, asking her to come home for his 60th birthday. She was surprised; he was not usually sentimental about birthdays. Nevertheless, she hopped on a flight and flew to Los Angeles to meet up with her father and sister.
Milton Wexler picked up his daughters, Alice and Nancy, from the airport and drove them to his apartment. After an anxious ride, he sat them down and told them a story. The previous summer, a policeman had stopped their mother as she was walking across the street on her way to jury duty. “How can you be drunk so early in the morning? Shame on you!”, he shouted.
Leonore Wexler, a smart, law-abiding, 53-year-old retired biology teacher, wasn’t drunk. In fact, she rarely touched alcohol, let alone at nine in the morning. But she could see why the policeman thought so; she, too, had noticed her increasingly lumbering movement. Knowing what this might mean, she called Milton, who arranged an appointment with a neurologist that very same afternoon.
Leonore’s worst fear came true: she had Huntington’s disease.
The diagnosis was a nightmare she knew too well. Huntington’s had taken the lives of her father and her three brothers. Abraham Sabin, Leonore’s father, died in a state hospital on Long Island when she was 13. She overheard the doctor say he had Huntington’s chorea. After looking it up at the local library, she learned about the fatal neurological disease haunting her family. Chorea, from the Greek word for “dance,” cruelly expresses one of Huntington’s distinct symptoms: an uncontrollable writhing of the body, arms tracing arcs in the air, legs jerking in random directions, face twitching through a series of expressions — the opposite of dancing. She learned that there was no treatment and that, incorrectly, the disease afflicted only men.
Leonore went on to be the only one among her siblings to attend college. Keen to learn about her family’s affliction, she got her master’s degree in biology with a specialty in genetics at Columbia. Her brothers took different paths: Jesse sold clothing, while Paul and Seymour started a swing band in New York City.
By 1950, the signs became impossible to ignore. Jesse, then 48, loved performing magic tricks, spinning coins, and pulling them out of his ears, nose, and pockets. Now, his fingers danced uncontrollably, and his coins fell to the floor. Paul, 44, and Seymour, 43, increasingly felt off-balance while walking and struggled to find words during conversations. In September 1950, a New York neurologist diagnosed all three brothers with Huntington’s on the same day.
Leonore was devastated by the news and descended into depression. Her brothers had funded her education, a path she took to understand the very disease now confirmed to haunt them. At 36, she was “fearful for what lay ahead for them and for herself.”
Milton hadn’t known about the disease in his wife’s family. When he learned that both men and women could be affected, he realized what this meant: Leonore might have passed it on to their daughters. It only deepened her anguish.
Facing his family’s genetic roulette, Milton, a former Navy lieutenant commander, sprang into action. He left the Menninger Foundation in Kansas in 1951 and moved his family to Los Angeles to start a more lucrative private practice, knowing he’d need to support his brothers-in-law and prepare for what might come. Despite the chaos, he clung to hope for his daughters. After Paul died in 1964, the second of Leonore’s brothers to pass, Milton assured Nancy and Alice that their mother would not get the disease. He truly believed that his daughters would be spared as well.
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