Sophia is one of the twins who is affected by the mutation in her SCN2A gene which causes seizures, autism, delayed cognitive and fine motor skills and is nonverbal. However her diagnosis does not define her. She is a very happy go lucky girl who is always on the move. She loves to play chase, tickles, and social interaction games. She has a twin brother and little sister who adore her, keep an eye on her and even have learned to do therapy with her just by seeing so many therapists working at home with her. All her therapists and teachers say she is beautiful, has a wonderful smile, goofy and makes faces that you can’t resist laughing. That is so true. We love her a lot and have the most fun cuddling and playing social games with her and it is priceless to see her smile and laugh.
Sophia loves water and movement so we try to find activities that would give her the sensory input as well as fun. We would love for our kids to be able to engage in fun activities like biking, swimming, ice skating. We dream for us to go on rides together as a family which at the moment is not possible with Sophia. We wish Sophia can participate in the upcoming ‘Pedal the Cause’ fundraiser with her siblings who have been doing it for the past couple years. She does not have the cognitive ability to ride a regular cycle and learn to balance in spite of our efforts at it. She would benefit getting an adaptive cycle to be able to ride with other kids and her siblings do and we could have fun together.
The Arya Foundation has helped Sophia get an Ipad for her communication needs couple years back and we sincerely hope we can get an adaptive cycle.