Rosanna’s Updated Story – March 11, 2026
10 years old
Texas, USA
Warrior #92
(See Rosanna’s Original Story below)
Rosanna is 10 years old from Texas. She was diagnosed with SYNGAP1-Related Disorders in 2019. She carries a warrior’s heart and beautiful smile that reminds us that her strength can be fierce, gentle, and powerful at the same time.
As a family we continued learning about special needs, learning about epilepsy, autism, behavior, sleep disorder, navigating into therapies, school and medical system. Rosie, as everybody calls her, has participated in different research studies to understand better how SYNGAP1 behaves through time and find a cure for a better life. We have had two trips to CHOP for the ProMMiS Natural History Study. After multiple blood draws, EEGs, appointments with specialists, daily medications, hours of speech therapies, we would say that her journey has not been easy, but courage shines through her bright and she fights a battle most people never see.
She is in 4th grade in public education with an adapted IEP. She loves the school and her teachers, she participates in Special Olympics, enjoys fishing with her classmates and teachers. She likes to play with a soccer ball, skateboard, water, travel, watch Disney movies, dance, and play with her younger sister Ivanna. She continues acquiring new skills every single day toward independence. Her bravery is quiet yet powerful.
Rosie inspires the whole family. We know that her smile tells a strong story of resilience and grace. As a Hispanic family, we are proud to be actively involved in SYNGAP1 Community raising awareness, collaborating in research efforts, standing together in times of challenges .
Living with SYNGAP1 has strengthened our community to advocate, educate, and support other families walking this journey. We are building bridges, creating impact, and showing that our community is strong, present and determined.
While we continue working toward a cure, Rosie continues being a warrior with sparkling eyes and a smile full of hope.
Rosanna’s Original Story – December 2, 2020
5 years old
Dallas, Texas
Warrior #92
Rosanna turned 5 on November 30! She is the first granddaughter in both families. She is the sweetest girl and at school, her teachers love her, and everybody calls her “Rosie” but she is shy with strangers. She receives therapies at school.
Rosanna was diagnosed with SYNGAP1 in November 2019, before the diagnosis she was given the diagnosis of global development delay and hypomyelination. She does not speak much, it is her biggest challenge, but nevertheless she can say the letters of the alphabet, the colors, count the numbers and tries to sing the happy birthday’s song. She loves people and is affectionate with her close family.
She has had some sleep disturbances and behavioral problems that are a challenge for us but with love and patience we get over it. Rosanna tries to learn hard and makes progress everyday and we are proud of her. Also, she is a superhero with superpower, she can see in the dark and walk in a dark room without problem, she has a good orientation.
Rosanna has a younger sister (Ivanna) who is her sidekick, she is truly her engine to keep her going.
Rosanna’s favorite things are; music, swimming, watching cartoon on TV, running and going on the slide at the park. We love her a lot; she is our gift.
-Mom
