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Newly Diagnosed

If you are reading this section of our website, you are most likely the parent of a child who is newly diagnosed 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 your journey will be equally as joyful and wondrous.  Before you begin reading about what to expect, we hope you will find comfort in these words:  you are not alone.  There are many families dealing with aniridia and multiple organizations that support aniridia. Our volunteers are here to listen and provide support. Contact them at and

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 a few days or a few months after birth.  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 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 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 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:

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