Our journey started when our daughter, Jadyn, didn’t do well at her 9-month check-up as a baby. She wasn’t eating and her muscle tone started to tighten up. That is when we were referred to a neurologist, and the mystery began. The first neurologist we saw kept telling us that everything was fine. Jadyn was just a little delayed but not to worry. It wasn’t until she was 2 that he decided to do an in-office EEG that showed seizure activity. Then began our long road of seizure medications (that didn’t work) until we looked for more answers with Texas Children’s Hospital. The doctor there ordered genetic testing that lead to the diagnosis of the SynGap1 mutation. Jadyn is now a healthy 6-year-old girl. Her seizures have finally been controlled after trying her 7th medicine, Lamictal. She is still non-verbal and cannot eat solid foods. Her behavior is mild, but she doesn’t interact with others very much. Jadyn does have sensory issues, such as chewing on clothing/hair and spinning objects. Fidget spinners are the best! We have also had to “Jadyn Proof” our house because she is such a climber! She sure keeps us on our toes!
Jadyn has a little brother who is 18 months younger than her. He doesn’t ask questions about why Jadyn doesn’t talk or play but does understand that she is special. Having a unique household has its challenges at times. Jase, her brother, is now in tee-ball and games are a challenge. Basic family outings take more planning and preparing. But we put our best foot forward and make things a new normal for us. Jadyn has taught us how to be a stronger family and that love comes in many special ways.