CURE SYNGAP1 State Ambassador, California (North)
Co-host of SYNGAP1 Stories Podcast
Rainy is a single mom to Hope, 4 years old. Hope was diagnosed with SYNGAP1-Related Disorders (SRD) on November 27, 2023. She briefly lived in South Africa and Kentucky, but most of her life has been spent in Northern California. A Medical Assistant for many years, Rainy’s dream was always to be a mom. In her early twenties, however, she was told that having children was not possible. Hope was an unexpected surprise, to say the least.
Life was difficult for Rainy and Hope, but they had each other. During her first four years, Hope was diagnosed with failure to thrive, torticollis, severe dextroscoliosis, developmental delay, food aversion, hypoglycemia, hypotonia, autism, seizures, and finally SYNGAP1-Related Disorders. The loneliness of having a special needs child sunk in deep, but she soon found CURE SYNGAP1 and followed them on social media.
Hope was accepted into 3 research studies located across the United States. Flying was too expensive so Rainy made an almost 8,000-mile trip with Hope and her caretaker to take part in these studies. This trip, called Hope4theCure 2024, was all about spreading awareness, raising funds for CURE SYNGAP1, and, after meeting other SYNGAP1 families, connection with the CURE SYNGAP1 community.
The loneliness and devastation from Hope’s diagnosis is still there, but it is lessened by the love and support from the SYNGAP1 community. Rainy believes that participating in clinical trials, research studies, questionnaires, and raising awareness and funds is how we are going to find a cure. She plans to document her journey in order to pass information about the studies to other families. Having details may reduce the fear of the unknown and encourage more families to participate.
Rainy is excited and honored to volunteer for CURE SYNGAP1 and is already planning Hope4theCure 2025.
Read Hope’s Warrior Story here.
Hear Rainy talk about her family’s SYNGAP1 journey on Episode 28 of SYNGAP1 Stories
Hope4theCure 2025 donation page
Email: rainy@cureSYNGAP1.org