Sometimes what they find is unsettling. But in the emerging communities of the genetically rare, more often it is sustaining.
For three families, the impulse to find others in the same situation was immediate.
A few months before the Lanes crossed the state to meet Taygen’s chromosomal cousin, Jennie Dopp, a mother in Utah, was scouring the Internet for families with “7q11.23,” the diagnosis that explained her son’s odd behavior and halting speech.
“I want someone to say ‘I know what you mean,’” Ms. Dopp told her husband, “and really mean it.”
Noa Ospenson’s parents flew from Boston to South Carolina for a meeting of 100 families with children who, like Noa, are also “22q13.” Hoping for more information about their daughter’s diagnosis, they emerged as lifetime members of what they call “Noa’s tribe.”
For each of them, a genetic mutation became the foundation for a new form of kinship.