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  • I am 31 aged from isle of Lewis with Albright's bone and muscle disorder pseudopseudohypoparathyroidism chat if you like to know

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  • Hi, I'd really like to hear from other parents in similar situations to myself if possible as I'm struggling!
    My 8 year old daughter was recently diagnosed with congenital heart defects and has already had open heart surgery to repair a valve. This was in March and we've recently been told that she needs a further operation in the next few months. We are obviously greatly distressed by this news but our main worry is our daughters reaction when we tell her that she needs yet another operation as she was really traumatised by the experience last time and hates hospitals now with a passion!
    I'd really welcome anybody else's experiences with children of similar ages or just anyone who understands how we feel.
    Thankyou x

    August 18
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  • Hi. I'm absolutely desperate to find someone else with Porencephaly - a life limiting neurological condition that my baby has. Symptoms are epilepsy, development delay, visual impairment. My Alice has just turned 1. I can't find any support groups or anything on Facebook or the Internet, just little information on the condition.
    I'm desperate to hear someone else's story of Porencephaly because until I do, I feel so utterly alone with my daughter and this horrible brain condition.
    Please help me if you can.
    Thank you.
    Julia. (Alice's devoted Mummy).

    August 9
    • Alex_CAF_mod
      Alex_CAF_mod
      Hi @JuliaLovesAlice,
      Welcome to the Community.
      I'm so sorry to hear you are feeling very isolated with Alice's condition, that sounds really tough. We currently don't have a condition group for Porencephaly, would you like me to set one up for you? It may help to meet others with the same condition.
      Take good care,
      Alex (Contact a Family)
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