Tell your story…

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5 Comments on “Tell your story…

  1. Hi I just wanted to share with you all a story of my brother who has hpe.he was born with what we thought was serable palsy sorry about my spelling but a few years ago my brother started getting very sick and had infections and malnutrition and allsorts going wrong.when doctors were baffled at what was so wrong they did more resurch and found out that he did infact have hpe they seemed to be in shock as he is now 23 years old and he is the eldest living person with this condition but we are praying someone can help us keep him alive for as long as we can as doctors are now saying he is at the end of life and we can’t bare the thought of loosing our boy so please if anyone is out there who can help please get in touch we would do anything for an extra few years with him x

  2. Dear Alicia, I’m so proud of you for writing about your miracle brother. Having him for 23 happy years is so special. I’m sure he will have many prayers sent his way. Enjoy everyday with him he knows how much you love him. I lost my beautiful granddaughter Michaela Christian 18 months ago. Michaela also was an HPE miracle. Michaela was 18 years old. She was healthy and happy, I kissed her goodnight, the Angels came for her as she was sleeping sweetly in her bed at home. I am grateful for every moment I spent with her.
    I live just outside of Dallas, Texas. There is a young man by the name of Daniel who lives in Garland, Texas, he is now 25.
    Please write and give us your brothers name. You are in my prayers, Kathie

    • Hi Kathie thank you so much to commenting,and I’m sorry for your loss my brother is also called Daniel we live in the uk and nobody else is known to have hpe.what do we look for when he is close to the end.I would love to no more about this hpe as we don’t no a lot and doctors here don’t no either if you can help us in anyway understand hpe and explain to me what we should be expecting the nxt few months or years would be great help. I love him so much and I’m so scared of losing him it makes me feel sick xXxX

    • Thank you kathie.rip to your granddaughter firstly.my brother is also called Daniel we live in the uk and nobody knows a anything about hpe at all we are pleading with people to help us understand hpe and what to expect over the time we have left with him maybe you could give me some more info if you could please I would really appreciate every bit of info anyone could give to my family xXxX

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