My name is Hilda and I’m the mother of a child born with septo-optic dysplasia. I started an Instagram account to share about what it’s like raising a little boy who is blind – and how amazing he is. I changed the name of the page to @OurBlindSide because I’d like to change the way others see raising a child who is blind. When Ashton was born and I was told he was blind and had septo-optic dysplasia, I was heartbroken thinking about all the challenges and all the things…
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2018 has been another incredible year in the BlindNewWorld. We love hearing – and sharing – your stories of adventure, triumph, love, family, learning and so much more. These stories are what keep us going – and what keep our community strong. And we don’t want you to miss a single one of them. So to close out the year, we’re bringing together the full collection of 2018 #MyBlindStory posts. Get to know each and every one of the people who have shared their stories with us this year. And…
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A little bit about me: I am an 18-year-old high-school senior from St. Paul, Minnesota. I have Stargardt Disease and I’m significantly visually impaired. A couple of years ago I started a non-profit called Louie’s Vision that works to help kids with visual impairments find adventure. About a year ago, I approached my parents and told them I wanted to do the Ironman, a one-day race that consists of a 2.4-mile swim, a 112-mile bike ride, and a full 26.2-mile marathon. I was just 17 years old, had no experience…
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My name is Dave Steele. I’m a singer and poet from the UK who, since being diagnosed with retinitis pigmentosa in 2013, has dedicated my life to raising awareness for visually impaired people worldwide through poetry and music. Following is a poem I wrote for my daughter, Ellie. The Secret It took me years to come to terms with how my eyes declined Through stages of acceptance of slowly going blind But nothing I could ever do would allow me to prepare To tell my little girl the thing I…
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I am a 14 year old blind skier, horseback rider, cross-country runner, Challenger Little League baseball player, singer, musician, voiceover artist, radio personality, advocate, student lobsterman and geek supreme from a small fishing village named Beals Island, Maine. Oh, and one more thing you should know, I’m a huge Boston Red Sox fan! I was born totally blind from a rare genetic condition known as Leber’s congenital amaurosis (LCA); because of this, I’ve been thrown lots of curveballs in my life. I’ve been bullied in school to the point of…
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When my baby daughter was 6 weeks old, somebody wearing a white coat told me she was blind. She wasn’t blind. I knew that. But I also knew there was something wrong with her eyes. It turned out to be nystagmus. I’d never heard of it before. From that day on, our nystagmus journey began. Nystagmus is characterized by uncontrolled eye movements, which make focusing very difficult. It is a lifelong condition and cannot be corrected with glasses or contact lenses. Most people with this condition have impaired depth and…
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“Long live the pioneers Rebels and mutineers Go forth and have no fear… It’s our time to make a move It’s our time to make amends It’s our time to break the rules Let’s begin” –X Ambassadors, Renegades Earlier this month, I was at the X Ambassadors concert here in Minneapolis. I have been a fan since I first heard them. I went with my family, friends and a few people from the Louie’s Vision Board of Directors. The show was above and beyond what I could have expected….
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My three children, two sons and a daughter, are typical teenage kiddos. They go to public school. They play sports. They have friends. They often stay up too late, keep their rooms quite messy, and talk back to me every now and again. Yep, pretty typical. But my kiddos also each have a certain, not-so-typical aspect that makes them, well, them. Many people describe my children as extraordinary. But I don’t. High achievers? Yes. Resilient? You bet. But extraordinary? No. However, it is my expectations for them and their expectations…
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My name is Kai Owens, and I have an aggressive form of Retinitis Pigmentosa (RP). RP is a form of vision loss that causes night blindness, blind spots known as scotomas, and loss of central acuity and peripheral vision. After being diagnosed in the third grade, I began learning braille, typing, and screen reading computer software – and I decided that no matter what happened, I wasn’t going to let it stop me from doing what I wanted to do. Ever since I was a young kid I have been…
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Vicky is our four-year-old girl and she is losing her sight due to a rare genetic condition called Leber Congenital Amaurosis. And I would like to take a moment to thank her. I have redrafted this post many times, writing and rewriting all the little things I thank Vicky for. No words seem to capture all emotions and feelings. The truth is simple: I want to thank Vicky for what she’s teaching us. When you hug me strongly and tell me “Mummy, I love you sooooooo much,” you are teaching…
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