{"id":6347,"date":"2024-11-15T13:46:19","date_gmt":"2024-11-15T12:46:19","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/rosaly-has-two-prosthetic-eyes-due-to-retinoblastoma\/"},"modified":"2026-09-09T17:14:59","modified_gmt":"2026-09-09T15:14:59","slug":"rosaly-has-two-prosthetic-eyes-due-to-retinoblastoma","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/rosaly-has-two-prosthetic-eyes-due-to-retinoblastoma\/","title":{"rendered":"Rosaly has two prosthetic eyes due to retinoblastoma"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2024-11-15T13:46:19+01:00\">15 November 2024<\/time><\/div>\n<p class=\"wp-block-paragraph\">A few days later, at the Retinoblastoma Center in Amsterdam, the eye is removed and the first round of chemotherapy begins. But the other eye also turns out to be affected. For now, this eye is left intact. Rosaly undergoes several treatments under general anesthesia. Until she is three years old, she can still see a little with that eye. After that, her vision is completely lost. When she is five years old, the decision is made to remove this eye as well, followed by another round of chemotherapy. Since then, Rosaly has been wearing two ocular prostheses.       <\/p>\n<p class=\"wp-block-paragraph\">Rosaly (22 years old) can\u2019t really remember ever being able to see. \u201cI have a vague memory of a little moon with colors. That little moon hung above my bed. But other than that, not really.\u201d She does, however, remember clearly what the days in the hospital were like. \u201cThe long wait\u2014that didn\u2019t feel good. My parents had explained to me in simple terms what was going on. I accepted it. The hospital visits were just part of it. And getting a new bead added to my \u2018Kanjer\u2019 necklace every time\u2014I\u2019ll never forget that either. Those are the good memories from that time.\u201d   <\/p>\n<p class=\"wp-block-paragraph\">Rosaly has been seeing <a href=\"https:\/\/ver-ooginoog.nl\/en\/ocularists\/\" data-type=\"page\" data-id=\"843\">ocularist<\/a> Fr\u00e9d\u00e9rique Bak in The Hague ever since she was a baby. \u201cWhen you\u2019re little, you get a new prosthesis very often. As a little kid, I didn\u2019t really like having it put on and taken off. You also have to keep getting used to the new size of the prosthesis. But luckily, I\u2019ve never had any major problems, like infections. Now that I\u2019m older, the visits to Fr\u00e9d\u00e9rique are much easier. My mom always comes with me. She checks to see if the prostheses look good. And I check to see if they fit comfortably.\u201d <\/p>\n<h2 class=\"wp-block-heading\">Elementary School<\/h2>\n<p class=\"wp-block-paragraph\">Rosaly attended a regular elementary school in her village. An itinerant educational specialist from Visio provided support to Rosaly and her teachers. She began learning Braille as early as second grade so that she could keep up in third grade. In fifth grade, Rosaly was given a laptop to work with. \u201cActually, I wasn\u2019t happy about that at all. I didn\u2019t want to be any different from the other kids in my class. I tried to participate in everything as much as possible in elementary school. For visual activities, like arts and crafts, my teacher and I often came up with alternatives. My classmates were always very helpful.\u201d Rosaly also took part in the end-of-year musical, even though it took some effort. \u201cNormally, a dance is demonstrated once and then you copy it. But my classmates had to practice with me a lot until it went a little more smoothly. I look back on a wonderful time in elementary school. I was lucky. I was never bullied.\u201d       <\/p>\n<p class=\"wp-block-paragraph\">\n<div class=\"quote-section\">\n<div class=\"quote-icon\">\n            <img loading=\"lazy\" decoding=\"async\" class=\"quote-icon-left\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/themes\/ooginoog-child-theme\/resources\/images\/svg\/quote.svg\" alt=\"icon left\" width=\"22\" height=\"22\"><br \/>\n            <img loading=\"lazy\" decoding=\"async\" class=\"quote-icon-right\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/themes\/ooginoog-child-theme\/resources\/images\/svg\/quote.svg\" alt=\"icon right\" width=\"22\" height=\"22\">\n        <\/div>\n<div class=\"quote-text\">\n<p>\u201cBeing blind takes a lot of energy\u201d<\/p>\n<\/div><\/div>\n<p class=\"wp-block-paragraph\">\n<h2 class=\"wp-block-heading\">Swimming and Piano<\/h2>\n<p class=\"wp-block-paragraph\">Rosaly started swimming lessons when she was six years old. \u201cI was in a special group with, for example, children with intellectual disabilities and hearing impairments. I really enjoyed swimming. After I earned my swimming certificates, I continued at a swimming club.\u201d She also learned to play the piano as a child\u2014not by reading sheet music, but by ear. \u201cIt was all pretty exhausting. I went to bed much earlier than other kids\u2014back then, and actually still do. Being blind just takes a lot of energy.\u201d    <\/p>\n<h2 class=\"wp-block-heading\">Building Self-Confidence<\/h2>\n<p class=\"wp-block-paragraph\">Rosaly attended the HAVO program at <a href=\"https:\/\/www.visio.org\/home\/\" target=\"_blank\" rel=\"noopener\">VISIO\u2019s<\/a> special education school in Rotterdam. A taxi picked her up every day at her home in Schipluiden. \u201cThat alone was an adventure in itself,\u201d she recalls. \u201cThere were times when I was dropped off in Oostvoorne instead of Rotterdam, or when they picked up the wrong child. It took some getting used to high school at first. But I\u2019ve always enjoyed it. VISIO Rotterdam is a small school, so I got to know everyone pretty quickly.\u201d   <\/p>\n<p class=\"wp-block-paragraph\">After high school, Rosaly took a gap year at <a href=\"https:\/\/www.visio.org\/nl-nl\/revalidatie-en-advies\/intensieve-revalidatie\" target=\"_blank\" rel=\"noopener\">Loo Erf<\/a>, a rehabilitation center for the blind and visually impaired. \u201cI went there three days a week to work on a number of personal goals. You\u2019re given a customized program. I worked on my self-confidence there\u2014for example, learning to travel alone on public transportation.\u201d <\/p>\n<p class=\"wp-block-paragraph\">\n<div class=\"quote-section\">\n<div class=\"quote-icon\">\n            <img loading=\"lazy\" decoding=\"async\" class=\"quote-icon-left\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/themes\/ooginoog-child-theme\/resources\/images\/svg\/quote.svg\" alt=\"icon left\" width=\"22\" height=\"22\"><br \/>\n            <img loading=\"lazy\" decoding=\"async\" class=\"quote-icon-right\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/themes\/ooginoog-child-theme\/resources\/images\/svg\/quote.svg\" alt=\"icon right\" width=\"22\" height=\"22\">\n        <\/div>\n<div class=\"quote-text\">\n<p><strong><em>The lack of accessibility makes me sad<\/em><\/strong><\/p>\n<\/div><\/div>\n<p class=\"wp-block-paragraph\">\n<h2 class=\"wp-block-heading\">Buddy Jake<\/h2>\n<p class=\"wp-block-paragraph\">That mobility training came in very handy. These days, Rosaly takes public transportation a few times a week to Leiden University of Applied Sciences for her degree in Social Legal Services. But she doesn\u2019t travel alone. For the past year, Jake, her service dog, has been traveling with her. \u201cThe first year, I got by on my own with just my cane. But with Jake along, it\u2019s a lot more fun. And I feel safer, because a big dog like that commands respect.\u201d Still, traveling continues to present challenges. \u201cThe lack of accessibility in the Netherlands really gets on my nerves. For example, I always have to ask what number the bus is that I\u2019m getting on. And not everyone answers. Even the bus driver sometimes says nothing. I used to not want to be any different from the other kids. I\u2019ve come to accept that now. But that lack of accessibility\u2014it can still really make me sad.\u201d      <\/p>\n<p class=\"wp-block-paragraph\">Incidents like this are also featured on the YouTube channel <em>\u201cAnders Bekeken<\/em>.\u201d \u201cI started this YouTube channel two years ago with two girls from high school. Claudia, Kim, and I have always stayed in touch. In our conversations, we realized that we often received the same comments and questions from other people. We wanted to do something with this. And that\u2019s how <em>Anders Bekeken<\/em> came to be. You can now also follow us on Instagram.\u201d      <\/p>\n<h2 class=\"wp-block-heading\">Future<\/h2>\n<p class=\"wp-block-paragraph\">How does Rosaly see her future? \u201cFirst, I want to find a good internship and finish my studies. And after that, I\u2019d probably like to work with people with disabilities. I\u2019d also like to continue with <em>Anders Bekeken<\/em>.\u201d She doesn\u2019t see herself living on her own anytime soon. \u201cOf course, it\u2019s incredibly difficult to find a place to live. And on top of that, I already have so many challenges when it comes to my energy levels. If I also have to do the housework and cook after a day at school\u2026 Phew\u2026 that\u2019s just too much right now. But in the future, I definitely want to have my own little place.\u201d     <\/p>\n<h2 class=\"wp-block-heading\">A Different Perspective<\/h2>\n<p class=\"wp-block-paragraph\">You can follow <em>Anders Bekeken<\/em> on<a href=\"https:\/\/www.instagram.com\/anders_bekeken\/\" target=\"_blank\" rel=\"noopener\"> Instagram<\/a> and <a href=\"https:\/\/www.youtube.com\/c\/AndersBekeken\" target=\"_blank\" rel=\"noopener\">YouTube<\/a>. They upload a new video every Saturday at 8:30 a.m. Would you like to get in touch with these girls? You can email them at: <a href=\"mailto:AndersBekeken.visie@gmail.com\">AndersBekeken.visie@gmail.com<\/a>   <\/p>\n","protected":false},"excerpt":{"rendered":"<p>When Rosaly is a few weeks old, her parents notice that her eye looks different. They suspect an infection. The family doctor refers them and their newborn to the Eye Hospital in Rotterdam. There, they diagnose retinoblastoma, a rare form of cancer in the retina.   <\/p>\n","protected":false},"featured_media":5211,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113,123],"class_list":["post-6347","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-personal-stories","library_cat-retinoblastoma"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6347","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/5211"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6347"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6347"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}