Newly Diagnosed with Aniridia?
If you are reading this section of our website, you are most likely the parent of a child with aniridia. Congratulations on the birth of your wonderful child! Although your journey as a parent will be different than what you expected, rest assured that your journey will be equally as joyful and wondrous. Before you begin reading about what to expect, we hope you that you will find comfort in these words: you are not alone. There are many families dealing with aniridia and multiple organizations that support aniridia.
As you may have already read in the other sections of this website, there are varying degrees of aniridia and ocular complications associated with aniridia. Depending on which ocular complications your child has, the diagnosis may have come at varying ages. Regardless of when you found out, the first few days following the diagnosis are often the hardest. You may be confused, sad, scared or even angry to find out that your child has a genetic condition. Some people accept the diagnosis and immediately move along to find what to expect next. Others experience the classic stages of grief. Whatever your response to the diagnosis, please know that there is no ‘right way’ to react and you should not feel guilty about being sad or angry. Be kind to yourself as you work your way through your emotions. Also, know that many times one parent reacts differently than the other. Try to be patient with one another.
As you read through this website, we hope that first and foremost you consciously make an effort to see your child as your child first and not see ‘aniridia’ first. Your child is the same child you fell in love with. Your dreams are the same. The journey to reach those dreams may just be a little different than you expected. So, where do you go from here? Broadly speaking, there are a few things you can do early in your child’s life to make the journey easier for you and your child:
1. Get informed. Information is power. You are your child’s best advocate. Read through all the sub-sections of ‘Aniridia – Learn More’ on this website.
2. 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 firstname.lastname@example.org. Debby’s son, Liam, has aniridia. We also encourage you to become part of Vision for Tomorrow’s Aniridia Facebook community by ‘liking’ us on the Facebook link just to the right of this section of the website (United Families of Aniridia).
3. Get medical support. It is important to establish a relationship with a sensitive pediatrician who has experience with children who 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.
4. 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 a 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 National Dissemination Center for Children with Disabilities (NICHCY) compiles information by state. Their website is: http://www.nichcy.org/Pages/StateSpecificInfo.aspx
5. 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 below for some suggestions.
6. 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 about stories with families dealing with aniridia.