Claire’s very special playdate
When Claire was four months old, she was diagnosed with an extremely rare genetic eye condition called sporadic aniridia. Basically what it means is that she was born without irises (the colored part of the eye). Her eyes are black with all pupil. The gene on the 11th chromosome that forms the iris skipped sporadically (meaning that Brant and I didn’t pass it on to her) when she was developing in utero. I was relieved to learn that it happened sporadically and that it wasn’t anything I ate, or didn’t eat that may have caused it. (Mom guilt at it’s finest) Her eyes are really healthy, and she has good vision she just has extreme light sensitivity, since the iris controls how much light enters the eye, and she doesn’t have any. (Hence the adorable sunglasses all the time). Other complications can arise with the condition, but so far we have been extremely lucky to have such a happy healthy little girl.
Before Claire was born, I had never heard of the condition, or even knew that it existed. Thanks to awesome sites like facebook, I was able to come in contact with other individuals with aniridia, and other mothers of children with aniridia. To my surprise, I found a mother of a little girl (only a year older than Claire) with aniridia locally! We decided to meet up and have a play date. It was an absolute joy meeting Sophie and her mother Meggin. It was so nice to sit and talk with another mom who can relate with similar experiences and feelings as I have had, and to compare notes with our kids. The condition is so rare so the support from another is so much appreciated. We both joked that we might burst into tears when we met each other and each other’s girls. Sophie and Claire had a blast playing, and we are grateful for the new friends.
Meggin and I just about died of cuteness watching these little girls play with their little sunglasses.
As odd as it sounds, it was fun to meet someone else with eyes just as black as Claire’s. I love these girls! They are so adorable! They had fun playing “monsters” and “making cakes” on the playground.
Lana Kopjar Jelacic
October 3, 2011at7:20 amDear Kate,
Its really amazing to hear such story! We live in Croatia and have a son with sporadic aniridia who is 19 months old. We haven’t heard of any other case of aniridia in our country and that really scare us.
Please if you have the time write to us we woul like to hear words of support.
Thank you,
Lana
Gigi Blandin
October 11, 2011at2:24 pmI don’t normally comment on blogs.. But nice post! I just bookmarked your site
Erika
October 13, 2011at11:30 amOh my gosh, I could just die of cuteness! How sweet! And how neat that you found someone in SLC to talk and relate to. That’s great!
Misty
August 25, 2014at9:12 pmHi Kate, THANK YOU for posting this! My 2 month old daughter Rebekah was just diagnosed with this condition today. We have been pretty heartbroken and right now I just feel numb not knowing what the future holds for her. I have been searching the internet for anything I can find on this disease and was happy to come across your blog. We also live in the SLC area and given how rare the condition is I was surprised to find someone else local who has experienced this. Anyway, I absolutely LOVE the pictures! I realize this was written a few years ago, but I am wondering if you still get together or if there are any meet ups? I would love any info you have.