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Aniridia and WAGR SyndromeA Guide for Patients and Their Families$
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Jill Ann Nerby and Jessca Otis

Print publication date: 2010

Print ISBN-13: 9780195389302

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780195389302.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 25 February 2021

Parents’ Experiences

Parents’ Experiences

Chapter:
9 Parents’ Experiences
Source:
Aniridia and WAGR Syndrome
Author(s):

Jessica J. Otis

Publisher:
Oxford University Press
DOI:10.1093/oso/9780195389302.003.0013

Editor’s Note: Since not much was known about aniridia for many years some doctors did medical procedures that we now know should not be done on aniridic eyes. Please do not use any specific story here as a guide for your journey, because some of the medical procedures mentioned should not have been done. Furthermore, please make sure to see a doctor with experience and knowledge of anirida. Lastly, please keep in mind, each person’s journey has different medical issues. Not everybody will experience the exact same medical challenges in their journeys. When we face challenges in our lives, we turn to those who love and support us. Yet sometimes it isn’t enough; we need the support of those who know how we are feeling and what we are going through. Parents who have children with aniridia can help each other by talking, lending advice, or just being there with a shoulder lean on. The stories compiled in this chapter are from parents who wish to share their personal experiences and struggles of having a child with aniridia. It is our wish that these stories will give you hope and inspiration as well as show you the love a parent has for a child, even when it seems like there is no light at the end of the tunnel. When I was 29 years old, we were blessed with our third child. We already had two sons, and now we had a little girl! From the very beginning, I knew something was wrong. Amy seemed to keep her eyes closed most of the time. When I took her outdoors, she would bury her head in my shoulder. I told our pediatrician to look at her eyes, and he told us not to worry. He said that she had muscle problems that surgery could correct. Over the months to follow, we decided to see an ophthalmologist. He told us that Amy had been born with a rare eye condition called aniridia.

Keywords:   Examination under anesthesia (EUA), PPCD (Preschool Program for Children with Disabilities), Parents’ experiences, Sporadic aniridia

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