Welcome to Navigating Blindness. My name is Kim, and my 20-year-old son, Kai, began unexpectedly losing his vision 10 years ago to an aggressive form of Retinitis Pigmentosa (RP). He has the first known case of RP in our family. When we first heard the words “Retinitis Pigmentosa, no known treatment, no known cure” our lives were shattered.
Fast forward ten years and Kai has learned to read braille, use a mobility cane, and advocate for himself. He graduated as valedictorian of his large public high school and has moved away to a large university. He’s become the world’s only legally blind sponsored skimboarder, and he’s a drummer, skater, and surfer. He’s determined to embrace vision loss and live his life to the fullest.
In 2020, our third round of genetic testing revealed that Kai had been misdiagnosed. He doesn’t have RP, but rather a condition called ABCA4-linked Retinopathy plus Autoimmune Retinopathy.
Vision loss has deeply impacted our family and has enriched our lives in ways we never could have imagined. It’s not been easy, but our lives are filled with opportunities for growth as we learn to accept and navigate blindness, together.
This blog contains information about our day-to-day wins and challenges as well as blindness awareness, Braille advocacy, mainstream education, and inclusivity. Please note that every single post is reviewed by Kai prior to being published. He gives his consent prior to anything being shared publicly. He will often add to what I’ve written or he will write his own post. He also speaks publicly about his sight loss and his articles and interviews can be found on our features page.
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Let’s navigate blindness together. – Kim Owens
Image Description: A family photo. Cash, Kim, Chris, and Kai stand together on a staircase. Kai holds a white cane.