A little boy born with a severe hereditary disease that causes severe vision impairment made a small but inspiring step last week when he bravely navigated his school's curb by himself for the first time.
Gavin Robert Stevens was diagnosed with Leber's congenital amaurosis (LCA) in 2009, when he was just 4 months old. The genetic eye disorder primarily affects the retina and causes severe vision impairment from a young age, according to the National Institutes of Health.
When doctors told Gavin's parents, Troy and Jennifer Stevens, that their little boy was essentially blind, their lives were "turned upside down," according to their foundation's website:
The words “there is no cure” rang loud in our ears. The grieving process started. We mourned for his vision, but we didn’t lose focus of the big picture. Gavin is happy and healthy. We will fight for him to visually enjoy the world as you and I do.
That fight continued last week, when his mother documented 4-year-old Gavin using his white cane to step off a curb at his school all by himself. These steps, while small, are important in the context of Gavin's burgeoning self-reliance and growing sense of self-confidence, Jennifer Stevens told The Huffington Post.
"We've been working on steps and shifting his feet. To someone who is blind, that needs to be taught," Stevens told HuffPost. "On this particular day I went to take his hand, and he didn't want me to hold his hand."
As Gavin negotiates the curb, you can hear the stress and the hesitation in his voice, his mother said. But slowly and steadily, Gavin steps down onto the pavement.
"He gets very happy when he does stuff independently for the first time," Stevens said. "It's such a joy to him."
Stevens said she documents these achievements both for her family and for the other families nationwide whose children also have LCA. Each video provides a little time capsule of hope, she said.
The family has been raising money for research that may one day lead to effective gene replacement therapy and maybe even a cure. Last year, geneticists scored a major victory when they were able to identify the gene mutation specific to Gavin's type of LCA -- an essential step toward treatment.
In the meantime, Gavin keeps working on a lot of little things. Gavin loves playing the piano, singing in the car and studying at the music academy he attends in Southern California. He's also learning to read Braille, and, his mother told the HuffPost, he recently learned how to identify the letter "G."
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