When Sonia Vallabh’s mother died of a rare disease at the age of 52, she found out that she was carrying the same ill-fated genes. Soon after her diagnosis was confirmed, she and her husband, Eric Minikel, set out on a quest to find a cure.
Sonia is 32 and her inherited genetic condition, called fatal familial insomnia, usually strikes people in their 50s. It is caused by the abnormal shape of a protein that causes other healthy proteins to become abnormal too.