10/04/2024
Make a wish for my little munchkin! I still have moments that I have to pinch myself to realize that she is real. She has been an unbelievable ray of sunshine and joy to me and her grandfather. She is an opinionated, stubborn, creative little person. Layilah loves music, water, dancing, hopping, elevators, escalator, story time at the library, especially the bubbles and the Halloween and Christmas display at Home Depot, the latest. I wanted to take a moment to express how much she has impacted my life. Because of her, I’ve become a better person. She has shown me the importance of patience, understanding, and appreciate the little things in life. Everyday feels like a celebration of the milestones we’ve achieved together. Abandoned by her mother (my daughter) and father, Layilah has lived with us full time since birth. Layilah has SYNGAP1, a rare genetic disorder caused by a variant on the SYNGAP1 gene. The Syngap gene is located in Chromosome 6 and is responsible for producing the Syngap protein. Not having the right amount of the Syngap protein leads to many neurological issues. Layilah suffers from intellectual disability, low muscle tone, developmental delays, Epilepsy, sensory processing disorder, gross and fine motor skills, coordination disorder, nonverbal and or speech delays, sleep and behavior disorders, autism spectrum disorder and visual abnormalities. We have our hands full. There is currently no cure or specific treatment for the underlying condition that causes Syngap1. It’s in the works and is extremely expensive. Today I noticed that she is becoming a little girl. Cannot wait to get to know the person you are becoming my love.
