Ilona is a fun loving girl full of love for music, animals and her family! When she smiles, we all smile. Ilona was one of the first in the world to receive a Syngap1 diagnosis in early 2011. The diagnosis gave us the answer we had been looking for on our what seemed like endless collection of clinical symptoms; autism, epilepsy, intellectual disability, sensory processing disorder, dyspraxia, ataxia, sleep disorder, eating disorder etc.
Ilona has this amazing ability to change people around her, she teaches us daily how to live in the moment, how to enjoy the smallest things and how to love without any limit. Ilona is not able to talk to us verbally but she communicates her love loud and clear.
Our biggest wish is to be able to advance research in an effort to improve her and other Syngap kids and adults quality of life. We hope to be able to continue showing her the world and we want her to be part of her community to the fullest.
- Reetta, Mom