The SYNGAP1 Siblings’ Perspective
Victoria Arteaga shares her thoughts as a mother on her daughters’ roles and experiences as SYNGAP1 Siblings. (Leer en español aquí.)
Victoria serves as the Director for Latin America at SRF. Her journey with SRF began shortly after her daughter Amelia was diagnosed in 2018 with SYNGAP1-related disorders. As a board member from 2020 to 2024, Victoria has actively advocated for Hispanic families in the U.S. and Latin America, promoting awareness, collaboration, legal representation, and more accurate diagnoses for SYNGAP1 patients. Additionally, she co-founded the Hispanic Society of Rare Diseases, where she aims to raise awareness of rare diseases and enhance access to resources for this underrepresented community in the United States. Originally from Colombia, Victoria holds a degree in International Business, specializing in Political Studies and Geopolitics from EAFIT University in Colombia, as well as an MBA from Florida Atlantic University in Boca Raton, FL.
The story must also be told from the siblings’ perspective, not just from the perspective of the parents’ guilt.
I don’t share the idea that Amelia, as a sister with a disability, is merely a burden to Violeta and Lourdes. She offers them a valuable life experience, and it is the role they have been forced to live without having chosen it. They, the sisters, find their place in this story.
It’s important to respect their wishes to help or participate, but they shouldn’t be forced into a specific role. Feeling valued within the family environment, whether it’s helping her comb her hair, holding her hand to keep her from falling, or wiping her face, if they genuinely want to do it, is completely valuable.
Every role has its value, as long as it doesn’t become an unbearable burden. However, we can’t ignore reality; having a child with SYNGAP1-related disorders is a difficult part of our lives.
Finding balance is complicated, but not impossible. Denying the undeniable is also a challenge. For me, finding loving roles is key, as is validating the feelings that arise in this context, which often include frustration, anger, fatigue, anxiety, as well as moments of joy and camaraderie, both among the adults and the children who face this complex reality daily.
They are the true heroes of Amelia’s story. As the official interpreters of her intrigues, they are the protectors and accomplices who celebrate her mischief and enjoy every moment together. Their love and support are invaluable, and they are truly incredible.
En español
La historia debe ser contada también desde la perspectiva de los hermanos, no solo desde la culpa que puedan sentir los padres.
No comparto la idea de que Amelia, como hermana con discapacidad, sea únicamente una carga para Violeta y Lourdes. Ella les ofrece una valiosa experiencia de vida, y es el papel que les ha tocado vivir sin haberlo elegido. Ellas, las hermanas encuentran su lugar en esta historia.
Es importante respetar sus deseos de ayudar o participar, pero no se les debe obligar a asumir un rol específico. Sentirse valiosas dentro del entorno familiar, ya sea ayudándole a peinarse, dándole la mano para que no se caiga o limpiándole la carita, si ellas genuinamente lo quieren hacer es completamente valioso.
Cada rol tiene su valor, siempre y cuando no se convierta en una carga insoportable. Sin embargo, no podemos ignorar la realidad; syngap1 es una parte dura de nuestras vidas.
Buscar el equilibrio es complicado, pero no imposible. Negar lo innegable también es un desafío. Para mí, encontrar roles amorosos es clave, así como validar los sentimientos que surgen en este contexto, que a menudo incluyen frustración, rabia, cansancio, ansiedad, y también momentos de alegría y camaradería, tanto entre los adultos como entre los niños que enfrentan diariamente esta compleja realidad.
Ellas son las verdaderas heroínas de la historia de Amelia. Como traductoras oficiales de sus enredos, son las protectoras y cómplices que celebran sus travesuras y disfrutan cada momento juntas. Su amor y apoyo son invaluables, y son realmente increíbles.
Read Amelia’s Warrior Story here.
Victoria’s SRF Bio is here.
Listen to Vicky on SYNGAP1 Stories Podcast here.
