Get Support Navigating Aniridia
Whether you are a new parent of a child with aniridia or have aniridia yourself and need to get some answers or just relate to someone, we are here for you.
Get informed – Information is power. You are your child’s best advocate. We’ve provided a lot of information throughout this site to help you get started.
Get peer support – Sometimes the best medicine for a parent is to reach out to other families who have been in their shoes. You can email our Aniridia Family Support Coordinator, Debby Casher at debby@visionfortomorrow.org. Debby’s son, Liam, has aniridia.
Get medical support – It is important to establish a relationship with a sensitive pediatrician who has experience with children who require special attention and may exhibit developmental delays. Most times, your pediatrician will be the one to make qualified referrals to other medical doctors. Most importantly, establish a relationship with a pediatric ophthalmologist who has experience with aniridia. Your child will need to be monitored regularly for glaucoma and other ocular complications related to aniridia.
Get professional services – It’s important for you to contact your county or state social service office to enroll your child in ‘Early Intervention Services’. Each state has different agencies dedicated to ensuring all children needing early services receive them. Even if you feel your child is developmentally on track, it’s important to be in contact with your local Early Intervention Services. The Center for Parent Information and Resources compiles information by state. Your pediatrician may be able to help connect you to the local agency, too, so don’t hesitate to ask about it.
Modify your environment and child’s wardrobe – Because aniridia affects the iris (which controls the amount of light entering the eye), individuals with aniridia generally have issues with glare and strong light sources. While indoors, try to position your child away from direct sunlight or have the light source come from behind your child. For example, rather than positioning your child’s highchair facing the window, put the highchair facing away from the window as it may be uncomfortable for your child to look into bright light. For outdoors, you will want to invest in sunglasses and hats. There are many brands available for babies and children. Please see the Links We Like section for some suggestions.
Stimulate your child’s vision – All babies (regardless of whether or not they have aniridia) see high-contrast, simple patterns best. Try to make the areas where your child spends the most time (e.g. their crib, their car seat…) as visually interesting as possible. Buy or borrow toys that are black and white or primary colors in high contrast. Dress yourself in high contrast colors or wear lipstick or nail polish with more vivid shades. There is a wonderful book written for parents of visually impaired babies called “Wee Play in the Dark” by Kristie Smith, which contains many exercises parents can do with their visually impaired children. Once your child starts services with Early Intervention, your child’s therapist will most likely recommend activities to stimulate your child’s vision as well. To close this section: it can be overwhelming to have your child diagnosed with a genetic condition. Our hope is that you find answers to many of your questions throughout our website and that you find hope through reading stories from families dealing with Aniridia.
