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Sturge-weber syndrome or birthmarks

Hi everyone. My son has Sturge-weber syndrome and i would like to speak to other mum with babys that may have the same condition. If your wonderin what it is its when the bloodvessels on the face form the same onto the brain resulting in sturge-weber syndrome. (birthmark) But it can cause alsort of problem...this condtion is rare and only affects 1 in every 400,000.


  • hello we met on the 'jordan' thread image , i noticed you had a few views and no replies, so thought i'd start it off, i'm so sorry to hear about your son and really hope you do find someone who can be of more use than me, and that the possible additional problems don't come to anything. my son has at the moment suspected dvm (delayed sight) although we are still waiting for him to see so it's not definite, just a waiting process. i know we don't have the same thing but at the same time i think it's nice just to have a chat with someone who is going through something that is making being a mum all the more challenging. so if you want to chat feel free but as i said i really do hope you find someone else on here who knows exactly what you're going through.
    i actually went onto another site, they don't tend to be as chatty as everyone is on here but for information they're great and as your sons condition is so rare the more places you look the more chance there is of you finding someone with it. good luck and thinking of you
  • thank you so much for you comment. image I have actually joined the sws charity and have found a group on yahoo with children with the same condition. image thanks for your reply tho.

    Its awful when they say you ahve to wait and see. They ahve said that to us about my son...noting is ever definate i get so worried sometimes, its the unknown that really upsets me. I feel like iam constantly checking on him to make sure he isnt have a seizer its awful.

    I hope your son gets better...iam sure he will. How old is he??
  • thank you. oh i'm really glad you found somewhere. my boy is 6 months (3rd june), how old is yours? i agree the wait, wait, wait again and the maybe this, maybe that, is very annoying and makes it very difficult to deal with or understand, it's terrible that you're feeling you have to check him all the time, i hope that whatever they are doing for you and your son they do it quickly so at least you know what you need to be doing and what the risks you need to be worrying about are, if that's possible (sorry i was one who didn't know what it was so did a quick google on it)
    Whatever happens, you and he will be ok, you're his mum and that means you 'just know' how to look after him and you're there when he needs that extra cuddle. good luck with it all
  • He is 6 months on 26th of this month. Its gone so fast i think.
  • i know, and at the same time i forget what it was like without him
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