Massachusetts, USA
6 years old
April 3, 2019

Elise in Mass.

Elise is 6 years old and the younger sister of Syngap siblings. We were already raising a 2 year old Syngapian (undiagnosed at the time) so when Elise started developing the same as older sister Lily, we were familiar with the journey. As soon as Elise had her first seizure at 2.5 years old we started to hunt for a genetic diagnosis and our "why?" We have carried on through the years with PT, OT, Speech, feeding therapy, etc (all times 2!). Elise is one of the most social and empathetic little girls I have ever met. Her biggest challenge for a long time was communication and through many years of hard work she is able to communicate most of her needs through some verbal approximations, touchchat, and signs. Elise loves to swim, ride bikes, play with her dolls and play with her fellow kindergarten friends.

- Mom of Lily & Elise

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