Christopher, my son, was diagnosed with Congenital Glaucoma when he was 3 months old.  Since then, he has been to All Children’s Hospital 29 times.  We are now faced with more challenges than ever with regards to his disease, his eyes, our (my wife and my) relationship, our emotions (we are emotional wrecks), our careers (they are hanging by a thread) and life in general.  This is our story.

Actually, our careers have changed – now.  Our relationship is stronger than it’s ever been.  Our emotions are in check right now.  Our life … well… that is another blog!

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2 Responses to “About”

  1. Ilse Says:

    Thank you, thank you, thank you! For sharing raw emotions concerning this condition. I now know that other parents experience the same pain, worries and sadnesss. Even when I look at the banner of the blue eyed boy, I see Carlo with almost the exact same eyes 🙂

    Carlo was diagnosed at 5 months (first two doctors at 3 months told me I was imagining it). Since then has had 14 EUA’s and one trabeculectomy. Is one drops every day morning and night and was diagnosed with a very rare glaucoma (something like 6 in the world?). We have a wonderfull doctor but unfortuanately a state hospital (which in South Africa equals horror!)

    And ps: I totally agree: an EUA IS as good as surgery. A close family member once corrected me by saying: “your child isn’t going for an operation, it’s just an examination”. But to me (as to you) going through all of that IS as good as an operation!!

    Kind Regards
    Ilse

  2. Amber Says:

    Thank you so much for posting this blog! My 3rd baby boy was diagnosed with congenital glaucoma at 1 week old. He is 5 1/2 months old now and had had 6 surgeries. His pressures seem stable now and we are looking at getting his first pair of glasses. I worry so much about his vision on a daily basis! It’s so nice to see that we are not the only ones fighting this battle!

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