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Tag Archives: Families

  1. My RP Secret

    August 15, 2018 - By Dave Steele

    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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  2. When It Comes to Demanding Access, Take the Big Swing

    July 18, 2018 - By Noah Carver

    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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  3. Our Nystagmus Story

    June 20, 2018 - By Sue Ricketts

    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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  4. Renegades

    May 23, 2018 - By Louie McGee

    “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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  5. Why I Learned to SEE: Set Extraordinary Expectations

    April 25, 2018 - By Kristin Smedley

    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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  6. Trail Blazing the World of Blind Skimboarding

    April 11, 2018 - By Kai Owens

    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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  7. Learning Through Love

    March 14, 2018 - By Silvia Cerolini

    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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  8. Living My Normal, Blind Life to the Fullest

    February 28, 2018 - By Derek Daniel

    My story is probably pretty boring to some. I am a husband, father and content creator who just happens to be visually impaired. I spend my days at home, making sure my kids are taken care of, making podcasts and videos, preparing dinner and so forth. It’s not the most exciting life, but it is my life. And, I think it displays what being a VIP is all about. It’s more than trying to do “amazing” things as a blind person. It is about getting up every day and living…

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  9. We Can All Be Exactly Who We Were Made to Be

    February 14, 2018 - By Eryn Austin

    We all have those definitive moments, those HUGE moments, in life when you just know things will forever be divided into before and after. Meeting our daughter Primrose was one of those moments. Our family of four became a family of five through international adoption in January 2016. We saw a photo and description of our daughter on a Facebook adoption advocacy group and instantly fell in love. The photo showed her as an infant, her eyes the most piercing silver/blue – and the description included her diagnosis, blindness from…

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  10. Marvelous Adventures with Marly and Aerie

    November 29, 2017 - By Juliet Cody

    My name is Juliet Cody. I am an immigrant from Colombia. When I was a child, to stay in touch with our strong ties to the tropical beaches of the Caribbean, my parents moved our family to the beautiful beaches of Southern California, where I still reside. I have a daughter, and taught pre-kindergarten until blindness struck. Despite this unexpected life event, I chose not to sit in the dark. Instead, I turned on the light of independence – I became involved in the blind community and returned to school…

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