ROWLETT, Texas — On a hot Texas day, 11-year-old Marley Mae Mansour bounces on a backyard trampoline with her brothers — a scene of childhood innocence that belies the extraordinary medical journey she’s on.
In early 2023, Marley was diagnosed with NARS-1, a newly identified and extremely rare genetic disorder that causes neurological and developmental impairments. Marley can express her basic needs, but she can’t hold a conversation, her mother, Kayla Mansour, explained to WFAA. She’s also had seizures, problems eating and gaining weight, and developed peripheral neuropathy as a result of NARS-1. It’s such a rare disorder that experts estimate fewer than 100 people have been diagnosed with it worldwide.
“It was kind of a gut punch, you know,” said Jonathan Mansour, Marley’s father…