Elsie R, age 3
Photograph by Morgan Barker (2022)
Elsie is joyful, determined, curious, silly, snuggly, affectionate, and perseverant. She loves listening to music. Since she recently started walking independently, she loves to explore the world around her on foot. Walking independently is an amazing accomplishment and her family is immensely proud. Elsie enjoys being outside, especially when she’s swinging or sliding. She also adores spending time with her family and is very close to her older sister, Ivy.
Elsie had a typical birth and was a happy, healthy, and easy-going baby but she began to miss milestones early on. After many evaluations, she was diagnosed with a rare genetic disorder known as SYNGAP 1, which causes multiple physical and developmental challenges.
“Our family has a different dynamic than most, given Elsie’s disability,” her mom, Jenifer, says. “Even the most basic task requires extra time and strategic planning. Elsie teaches us to be more patient, and to extend empathy and compassion to other families in similar circumstances. Our eyes have been opened to a world we knew very little about.”
Jenifer says, “Elsie faces challenges with tremendous joy, smiles, and laughter. She radiates joy to everyone in her life despite all the challenges she faces.”
Elsie es alegre, decidida, curiosa, tonta, mimosa, cariñosa y perseverante. Le encanta escuchar música. Desde que empezó a caminar de forma independiente, le encanta explorar el mundo que la rodea a pie. Caminar de forma independiente es un logro increíble y su familia está inmensamente orgullosa. A Elsie le gusta estar al aire libre, especialmente cuando se columpia o se desliza. También adora pasar tiempo con su familia y está muy unida a su hermana mayor, Ivy.
Elsie tuvo un parto típico y fue un bebé feliz, sano y fácil de llevar, pero empezó a perder los hitos desde muy pronto. Tras muchas evaluaciones, se le diagnosticó un raro trastorno genético conocido como SYNGAP 1, que provoca múltiples problemas físicos y de desarrollo.
“Nuestra familia tiene una dinámica diferente a la de la mayoría, dada la discapacidad de Elsie”, dice su madre, Jenifer. “Hasta la tarea más básica requiere tiempo extra y planificación estratégica. Elsie nos enseña a ser más pacientes y a extender la empatía y la compasión a otras familias en circunstancias similares. Se nos han abierto los ojos a un mundo que conocíamos muy poco”.
Jenifer dice: “Elsie afronta los retos con una enorme alegría, sonrisas y risas. Irradia alegría a todos los que están en su vida a pesar de todos los retos a los que se enfrenta.”
Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.