Hello, my name is Alayah Ramsie Rae, and I’m from Canada. I am legally blind, with a diagnosis of Leber’s Congenital Amaurosis (LCA) caused by a mutation in the CEP290 gene. I was officially diagnosed around eight months old, after my doctor noticed I wasn’t following my mom’s face or reaching for toys like most babies do.
Leber’s Congenital Amaurosis is a rare genetic retinal eye disease that affects approximately 1 in 100,000 births. It primarily impacts the retina, and without a fully functioning retina, vision can be extremely limited or even absent, resulting in blindness. My diagnosis is also degenerative, which means that the vision I have now may change or deteriorate over time. Whether that will happen in days, months, or years, we don’t know. Thankfully, my LCA is isolated to my eyes and hasn’t caused other health issues that sometimes accompany this condition.
My journey is just beginning. At 21 months old, I’m learning to use a cane to gain confidence, stability, and independence while walking. I’m also in the ‘pre-Braille’ stage, exploring books in Braille as well as the fascinating textures and sensations around me. My mom started an Instagram page for me to help increase accessibility in many ways. She wanted to spread awareness—not only about LCA, which is rare—but also about the idea that being different is not a limitation. Instead, it’s a beautiful advantage that allows me to see and experience the world in unique ways.
Recently, my mom faced a challenge at the Calgary Zoo. She noticed a lack of accessibility: there was no Braille on the washrooms, no audio guides, limited tactile experiences, and some areas were not accessible for guide or service dogs. These are the kinds of gaps that need to evolve and improve. Sharing experiences like these can help raise awareness and encourage better accessibility for everyone who needs it.
Of course, at first, my mom felt heartbroken. No parent wants anything to be “wrong” with their perfect child. She allowed herself a week to feel sad and process the diagnosis. But after that, she realized there was no reason to feel sorry for me. My life is going to be full of love, joy, and incredible experiences. The sky truly is the limit. God knew I was meant to be her child, and I bring endless energy, laughter, and curiosity into every day.
Blindness is not a limitation—it’s a different way to experience the world. It allows me to notice, feel, and explore things that others may overlook. I may see differently, but I see deeply, and every day is an opportunity to discover something amazing.
