5 years old
Pensacola, Florida
Warrior #220
Raelyn was born on February 20, 2020. After 36 hours in labor, they did an emergency C-section, and then quickly took her to the NICU and a different hospital. She had some breathing difficulties, and stayed for about a week. When we were able to bring her home, it was the happiest day of our lives! Fast forward to when she turned 1, we began noticing that Raelyn had not started crawling, and we brought this concern to her pediatrician. The only answers we got were, “Sometimes babies get behind, and there is nothing to worry about.”
When she turned 2, she was not walking yet either, and we suggested that she start Physical Therapy. She did not start walking till she was about 2-1/2. She also has not started to talk yet either. We continued to press her pediatrician for help.
When Raelyn turned 4, we went through a child find program and were able to get her into an IEP preschool program. Raelyn was talking a little, but mainly 1-2 words at a time – not much communication.
A week before Christmas, while I was at work and Raelyn was at school, I got a phone call no parent ever wants to get. They asked me if Raelyn has a history of seizures. I said, “Noooo!” They told me that she possibly had one. I dropped everything, and her dad and I ran straight to get her and head to the hospital. EEGs came back “abnormal” but still no definite diagnosis. She then started Keppra.
January came and I kept pressing her neurologist to please find out what is wrong with my baby. They suggested doing genetic testing.
We got a phone call with the results that she had SYNGAP1-related disorders, and all I can remember after they told us, was that my whole body went numb. I couldn’t believe it. I had no idea this was even a thing. Why is life so unfair to these precious little people? But we then knew we had a diagnosis, and we knew it was time to start researching and getting her the help she needed.
Raelyn is so full of life and laughter! She loves her big sissy more than anything. Raelyn loves being in the water – bath time is her favorite! She loves being in her comfort places the most. Since getting her into PT and her schooling, she has successfully managed to eat by herself most days. She can communicate better with small words, so we can understand her better.
She loves music and will dance the night away. We love our girl just the way she is!
But we will never stop fighting for her, and for everyone else going through this.
We are so thankful to have found a group of people that are going through the same thing!
