Why Samuel’s family is embracing advocacy in Chile

Doctors diagnosed Samuel with deafblindness when he was a baby. Now, at age 19, Samuel stays involved in school activities thanks to strong parents who advocated for his rights.

In 2003, Fabiola and Sergio welcomed their beloved son Samuel into this world. After attending several doctor appointments, they received the diagnosis that Samuel had Fraser Syndrome. Samuel was born deafblind.

Samuel always had everything he needed. Most importantly, he had a love of his parents, who always did everything they could for him. Fabiola stopped working to care for her son’s needs while Sergio continued providing for the family and ensuring they were all well.

In 2008 when they were looking into schools for Samuel, his mother learned about COALIVI in the news. Perkins has provided training opportunities and mentored COALIVI to become national leaders in addressing the needs of students with multiple disabilities. After seeing their work and several families’ and students’ testimonies, Sergio and Fabiola decided to move and live closer to the school.

Embracing advocacy for Samuel

Sergio and Fabiola enrolled Samuel in COALIVI at age four. There, he was integrated to the pre-basic levels, being stimulated in the visual and auditory areas. For nine years, his mom traveled 12 km (7.5 miles) every day, so her son could have access to the education he needed.

Samuel sits on a blue seat in a crowded room and holds on to his white cane.

Unfortunately, one day Fabiola passed away unexpectedly. Sergio decided to stop working and looked for alternatives ways to gain income while dedicating himself full-time to Samuel, a decision that he would choose again in a heartbeat.

Today, Samuel is nineteen years old, and despite still living a considerable distance from school, he always attends his classes. Over the years, Samuel accomplished so much. His most important lesson was learning to communicate and use Sign Language. Samuel has access to a sign interpreter who follows him on his academic journey.

By 2022, Samuel and his dad have actively participated in all school-related activities. Samuel completes his classes with his interpreter, and Sergio works as a significant member of the parent group.

Sergio is a recognized leader of the Latin American network of parents of children and young people with multiple disabilities and deafblindness. Samuel and his dad are impressive examples of resilience and kindness.

COALIVI and Perkins

In 2022, Perkins School for the Blind, in conjunction with local partners and national leaders -including COALIVI- convened to create a Strategic Working Group with the support of the Frank Foundation. The main goal is to work to support systemic and accessible quality education for children and youth with visual impairments and multiple disabilities in Chile, including those with deafblindness, like Samuel.

Perkins has provided training opportunities and mentored COALIVI, among other organizations, to become national leaders in addressing the needs of students with multiple disabilities. COALIVI now offers children the best-quality education. With their ability to train other schools and organizations, they are embracing advocacy as well to prompt national policy changes.

While part of the work is focused on developing local leaders, through Perkins Education Leadership Program, who can create sustainable change and reach more children, another important component is to strengthen the work between schools and families through strong networks that allow parents to support their children with multiple disabilities.

Samuel’s story, a student at COALIVs school since he was four years old, is a great example on resilience and the importance of family embracing advocacy for their children’s rights in Latin America to achieve transformational and lasting change.

Samuel on the left side wearing a light shirt and smiling next to his dad. Don Sergio, on the right side wearing a green and navy blue shirt, also smiling. The background shows a blue sky and green trees.
Samuel and Sergio now
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