Bella was born full term and she was a tiny baby; her weight was a little over 5 lbs. From the very beginning, Bella has been a fussy baby. It was very hard to keep her calm and she slept very little. At the age of 3 months, I started noticing something different. I noticed that she would move her hands and feet in circular motion.
At age 2, Bella started having seizures so her neurologist ordered genetic testing and Bella was diagnosed with SYNGAP1 in 2019 before turning 3. We got some answers, at least we had an explanation for all the symptoms that Bella was presenting.
Bella is 6 years old now and she will turn 7 in September. She works very hard everyday. We are all amazed by Bella's progress. Unfortunately behaviors are always a concern as she is getting stronger making her difficult to control in situations. Bella is still working on fine and gross motor skills.
We, as a family are working very hard on keeping Bella safe, and teaching her life skills, but most importantly, we love her with all our hearts. We love seeing Bella happy. She is outgoing and enjoys doing all of her favorite activities such as listening and making music, spending time in her swing, singing, and smiling.
We can use your help to raise awareness about SynGAP1.