Standing Strong with Naya

There is no greater joy for me than knowing my four children, ages 16, 14, 12, and 9. I used to joke that I wanted them to stay little forever so I could treasure every moment. In a way, that wish was granted with my youngest child, Naya.

At six months old, I noticed that Naya wasn’t developing normally. After a long and frustrating diagnostic journey, we finally received her diagnosis when she was 3. The cause was an ultra-rare spontaneous genetic mutation in her SYNGAP1 gene. This mutation leads to a devastating Developmental and Epileptic Encephalopathy (DEE), in which constant seizure activity in the brain interferes with normal development.

For Naya, this means living with epilepsy, autism, severe intellectual disability, sleep disturbances, motor delays, and speech difficulties. Despite her challenges, she is sweet, loving, and adored by everyone who has the privilege of knowing her. She loves to dance, sing, play outside, and swim at the beach.

We do our best to give her a rich and happy life, knowing that although she is growing well physically, she will never grow up mentally. The financial, physical, and emotional burdens can be crushing at times. She requires many hours of therapy each week and constant supervision to stay safe. Finding reliable caregivers is difficult, and we’ve been unable to secure even a few hours of respite each week.

I gave up my career to care for her full-time, which has been overwhelming, especially as we still have three other children with their own needs. I continue to work part-time for income. Life looks nothing like what we had pictured, and we’ve had to adjust our expectations and learn to be flexible. We've all done a lot of learning.

Naya has taught us to laugh at minor mishaps and to let go of what we can’t control. She’s taught us to work hard and to celebrate each milestone, no matter how small. But most of all, she has taught us so much patience.