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Any interest in a Peter's Anomaly Forum?

Posted by Amy Sue on 12/5/2008 8:04:22 AM.

My son has Peter's Anomaly Plus (including Asperger's Sundrome).  Just wanted to see if there's any interest in adding a forum on Peter's.

There are currently 10 replies.

      

  • 1 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by Judith Lesner on 12/20/2008

    hi,
    if you want to connect with other parents of children with this condition, you should contact the National Association for Parents of Children with Visual Impairments at 1-800-562-6265 and ask if they have any parents in their data base with children with that condition.
    judith



  • 2 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by kalfonso on 06/02/2009

    My daughter is 10 years old and has Peter's Anomaly. We live in Washington, DC and she has been treated at Hopkins, Duke U and now Children's National Medical Center.



  • 3 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by eil on 10/20/2009

    I would love to see a Peters' forum started. My 11 year old has bilateral Peters' and has been through over 190 eye surgeries and EUAs and now has two prosthetic corneas.

    Connecting with other parents would be INVALUABLE!!

    Great idea Thanks



  • 4 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by annavery on 07/18/2010

    My daughter is almost 4 months old and was born with bilateral Peter's Anomaly. She has already had several surgeries, including cornea transplants in both eyes. She also was born with a large arachnoid cyst in her brain, but they do not believe the two conditions are related. I would LOVE to hear from more parents of children with Peter's. Please!!



  • 5 . Any interest in a Peter's Anomaly Forum?
    Posted by lathacker9004 on 04/16/2011

    Hi, my name is Laura and my little girl was diagnosed with Peter's Anomaly. She now has Boston Keratoprosthesis cornea implants in both eyes seeing with her right eye. My husband and I would like to meet other parents that might have children with cornea implants or Peter's Anomaly. She is seen in Memphis, TN. We live in Little Rock, AR my email is laurarachelthacker@gmail.com



  • 6 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by melnat0806 on 06/22/2011

    Hi, my name is Sally and I have a 9 year old daughter with Peters Anomaly. She has been through 5 corneal transplant, all failing except for one, glaucoma surgery, cataract surgery, procedure to open her pulp and numerous EUA's. We live in Jacksonville, FL and is being treated by Baptist, Wolfsons, Nemours and St. Vincents. She is completely blind in her left eye and has some vision in her right. She is a very smart little girl and is at the top of her class at FSDB in St. Augustine. It would be wonderful to be able to talk with other parents that have children like Meli.

    (This post was edited by the author on 06/22/2011 )



  • 7 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by deniseseykora on 10/05/2011

    My name is Denise and my 9 year old son Sam was diagnosed with peters at birth. He had several cornia transplants, glaucoma surgery, cateract and retina surgery. He had light perception in his right eye but his retina detached at 9 months. He is blind in both eyes now and a very smart and funny boy. It would be a blessing to connect with other parents in the same boat!

    (This post was edited by the author on 10/05/2011 )



  • 8 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by clickswishjen on 03/13/2012

    My 6 year old daughter has Peter's Anomaly. It is so rare. I would love to connect with other parents.



  • 9 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by eil on 03/15/2012

    I would love a forum on Peters' Anomaly!! We have a 13 year old son who has endured hundreds of surgeries He now has prosthetic corneas in both eyes he just lost all vision in his left eye about 3 months ago When he was born I could not find Peters' Anomaly online A forum would be incredible!!! Thank you!



  • 10 . Re: Any interest in a Peter's Anomaly Forum?
    Posted by newparent on 03/07/2013

    Was a forum created? It seems that there was interest from several parents and the information in this forum would be extremely valuable. How can we have this forum started?


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