What is it like to have a 4 year old living with complex medical issues? Tough as sh*t. But Kaiti is a BAMF Mother! Her beautiful little daughter Layla was once considered a "Floppy baby".  She is unable to hold her neck up, sit, stand, walk, talk. After a 2.5 year search between Ontario and BC she was accepted to the Undiagnosed Disease Network at UCLA and were able to finally walk away with a diagnosis. She has PCH2d. It's a progressive, life limiting diagnosis. Parenting a first born is never easy. But nothing can prepare someone for parenting a first born who may die before their 5th birthday.