Saylor was diagnosed with SYNGAP1 in July 2021. She has Epilepsy (absence and atonic), Autism, Hypotonia, is non verbal and has intellectual delay. Saylor is 4 years old and from Newport, North Carolina.
Saylor is almost always in a good mood! She loves riding fast in the boat and on the golf cart, swinging as high as she can, watching Blues Clues, splashing in the water at the beach, and listening and dancing to music. Her eleven year old big sister is always looking out for her and spends time with her doing her favorite things. Saylor has always loved being read to and playing with toys that sing songs or make noises. Her new passion is coloring....on everything...and wants to do it all day, every day!
Since Saylor is non verbal she struggles regulating her emotions sometimes. We are working on her communication skills through pictures and sign language to help her express herself. She receives PT, OT and Speech at her preschool and, thankfully, she loves every minute of it. She will be starting ABA therapy in a few weeks. We are all excited to see her new developments once this gets going.
We are so grateful to have found SynGAP Research fund and are volunteering our time with the organization, as much as possible, to help Saylor and every other child!
We can use your help to raise awareness about SynGAP1.