When Carlos and Susana Elizarraraz became parents in October of 2020, it was something they had hoped and dreamed about since they were kids as childhood sweethearts.

Susana had a very typical pregnancy with their son, Carlos Jr., and all appeared well; however, they quickly realized when he was born that life would be very different to what they imagined.

Their baby spent the first 3 months of his life in the Neonatal Intensive Care Unit, where doctors discovered a genetic difference in his OTX2 gene on the 14th chromosome. This discovery is so rare that fewer than 20 people worldwide have ever been documented, leaving many unknowns to both his parents and doctors.

This genetic difference ultimately impacted the growth of his lower jaw, throat, mouth/throat muscles, the shape of his mouth, his vision in his right eye (causing nystagmus), and deformations in his right ear (internally and externally).

Despite his complex needs and all the uncertainties of the future, Susana and her husband were dedicated to giving Carlos the highest quality of life he could possibly have. So, when CCVI came to the table, it was a perfect partnership.

“We have to be proactive and think ahead through our day-to-day lives and extracurriculars more than we expected, but our life is so beautiful with him that we’d do it a million times OVER!” SAYS Susana.

In the first few years of his life, Carlos’ worldly experiences were limited, due to his high risk for respiratory infections, particularly with the COVID-19 pandemic striking just a few months before his birth.

Once he was enrolled at CCVI with a chance to interact with other adults and students, Carlos began to blossom.

Carlos started attending the Early Learning Academy, CCVI’s center-based program, to develop compensatory strategies in a specialized environment. More importantly, his parents began to learn more about visual impairments and the impact they can have on a child’s growth.

With the loss of vision, normal tasks such as walking, eating, communicating, or even interacting with others can be far more intimidating and difficult. Once his parents connected the dots, they began to understand the hesitancy their son had with walking and other developmental milestones.

This was the missing piece that answered many questions and solved problems that even doctors struggled with.

The Elizarraraz Family at the 2025 Trolley Run

While his teachers closely monitored his progress and adjusted his success plan as needed, Carlos began to achieve one goal after another, from walking independently to learning alternative forms of communication, like sign language and using an Augmentative and Alternative Communication device.

As Carlos continued improving his communication and developed physically, his mother—an educator herself— wondered what academics would look like for him. It wasn’t until one night when Carlos and his mother were reading together that he began to sign (language) the words on the page.

“I was SO shocked! It was a moment that affirmed for me - he’s got this! I can’t allow my fears to hold him back when he’s ready and willing to go far and wide! The moment that I realized he could read at the age of 3 is a moment that I’ll never forget,” recalls Susana.

The societal limits for children with disabilities are often set far too low and far less hopeful than what should be imagined. Just as CCVI believes that children have the right to be empowered and reach their highest potential, Susana and Carlos Elizarraraz learned this as parents. As Susana shared,

“Our kids are sometimes capable of much more than we could have ever imagined. They will grow within the limits that we set for them; the wider the margins, the greater the possibilities!”

Carlos recently graduated from our ELA Program in 2025 at the age of 4 and is now exploring his next exciting chapter: the role of a big brother

Embracing Uncertainties & Empowering Kids like Carlos

“We have to be proactive and think ahead through our day-to-day lives and extracurriculars more than we expected, but our life is so beautiful with him that we’d do it a million times OVER!” SAYS Susana.

“Our kids are sometimes capable of much more than we could have ever imagined. They will grow within the limits that we set for them; the wider the margins, the greater the possibilities!”