If you’ve landed at this site, there is a huge chance you are the parent, or loved one, of a child who has been diagnosed with aniridia. The diagnosis may have come as a surprise, especially if you were unaware of the possibilities of a genetic mutation, however we sincerely hope you know that you are not alone. We’ve been there, and know firsthand that there are many, many families in the same position, experiencing the same journey.
Accepting a diagnosis for your child may be difficult; the first few days may very well be the hardest, and running through a course of emotions is quite common. You may experience sadness, anger, confusion, or you may be scared; it’s all very normal. Some people experience grief; there is no correct way to handle a major diagnosis in your child, and working through your emotions will allow you to handle the situation optimally. Be patient and kind with yourself.
Your journey in parenting will nonetheless be rewarding, amazing, and joyful. Life has a way of throwing interesting curveballs in the mix, and while your path in parenting may be different than how you had envisioned it, challenges work in miraculous ways.
Your child is beautiful, and there is a wealth of support out here to assist you on your journey as the parent of a child with aniridia.
Aniridia is defined as an absence of irises in the eyes, and it causes vision loss. Though no cure has been found yet, there is support to help.
Spreading awareness, offering educational resources and empowering families who face an aniridia diagnosis is our mission.
Despite the challenges, your child can live a wonderful life with the assistance of the right tools and awareness.
Affecting 1 in 40,000 – 100,000 babies born, aniridia is a rare congenital disorder involving the absence of iris.
You should also know…
Aniridia syndrome is a complex congenital disorder, comprised of a variety of different medical issues, the most poignant of which is the absence of the iris in the eyes. It is most often detected at birth, and the most distinct feature is that the child will appear to have no iris coloration, with dark eyes.
Students, including Nadira Calderon who has aniridia, of the Braille Institute of Los Angeles learn to surf at local Manhattan Beach, though a partnership with Learn to Surf LA. These students are defying the odds of what’s possible with vision impairment. Click here to read more
Madeleine Babcock is a fearless, champion swimmer with aniridia and glaucoma, vying for a chance to compete in the Rio Olympic games. At just 12, she is aiming for a spot on the US Paralympic Team. Click here to read more
For the first time, a 12-year-old girl who is legally blind due to aniridia, was able to see clearly with the help of the breakthrough eSight technology. Normally unable to see across a room, she experienced 20/20 vision for the first time using eSight electronic glasses. Click here to read more