0
Washington, USA
11 years old
May 27, 2020

Cora

Cora was diagnosed with severe expressive Apraxia at age 2, and Doose Syndrome at 3 years old, prior to being diagnosed with SYNGAP at age 5.  Cora has multiple drop seizures per day and has been on multiple medications along with the Ketogenic diet since age 3.  She communicates with short sentences most of the time, and at school she is learning to use her AAC device.  She enjoys going to school and loves being with her friends and teachers.  Cora is cognitively delayed and struggles with academics, but she is making steady progress on reading and writing.  We are so proud of the progress she is making!

Cora loves to ride horses, swim, jump on the trampoline, ride her bike, and go to stores and restaurants.  Cora loves to attend live theatrical performances and go to the movies.  Her favorite movies are Buddy the Elf, Beauty and the Beast, and Peter Pan.

Cora is kind and gentle at heart, but struggles with controlling her behavior at times.  Most of the time she is delightful, funny, loving, and playful.  Sometimes she is angry, loud, stubborn, and defiant.  All of the time she wants to meaningfully connect with the people around her to love them and be loved by them.  Cora is learning a little more every day, and we are learning with her, about how to do just that.

- Mom


We Need Your Help

We can use your help to raise awareness about SynGAP1.

© Copyright  2018-2021 Syngap Research Fund  | All Rights Reserved | 
Privacy Policy
RegistryNewsletter
0