Eleanor was born on June 21, 2012, we received a Syngap1 diagnosis August of 2016. After many recommendations and a grant, we were able to get Eleanor tested at Children’s Hospital in St. Paul, MN. (Actually the National Syngap Awareness Day happens to be her birthday)
We live in Maplewood, MN and have a lot of support around us. Eleanor has never been diagnosed with Epilepsy or Autism. She is non-verbal and uses a communication device at home, for therapies and school. She also knows some signs and is very social.
Eleanor loves anything Disney, especially the Disney princesses and Blippi, a youtube star:) She is definitely an outdoor girl, and loves to find the beauty in nature. She loves flying and we recently took trips to both Disney World and the Gulf of Mexico. At home, Eleanor likes to ride her scooter, do chalk art with mommy, and just recently learned to pedal on her super cool pink bike!
The biggest challenges for Eleanor are communicating feelings and learning how to do this without getting upset. Goodbyes are always hard. She perseveres at many things that are challenging to her, and her giggles and smiles light up our lives. We are so proud of Eleanor and know she was made especially for us. She definitely is a Syngap Warrior!