in the hopes that another company will take over making the medication that she believes has transformed Marian’s life.Jenna Weets’ son Jeg was diagnosed in 2017. After learning about adrabetadex, she felt hopeful.
Serrano Russi treats Marian and says that the future for children with NPC will be murky after adrabetadex is no longer available.Marian McGlockin, 5, is a "dynamo" who tells knock-knock jokes and plays babysitter with her dolls. When she was first diagnosed with Niemann Pick Type C, she was already losing her ability to speak.remains frustrating. Researchers face challenges because there are fewer people to study, and the condition may progress very differently in different people.