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7165Re: [Myotubular_Myopathy] www.MTMFN.com website

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  • Connie Guinn
    May 2, 2009
      Hi John and Chrissie,  I see that you got Joey's autopsy results- have you had a chance to go over them, yet?  I am curious to know what the final word was.  I am still in shock over Joey's death.  I never would have guessed that anything so bizarre and sudden would happen to him like that.  He was a beautiful boy.  I know you miss him terribly.  I'm sending love and prayers to your family.
      Love you!

      Connie Guinn, Director

      MTM-CNM Conference Planning Team



      Good Search: http://www.goodsearch.com/?charityid=894813
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      From: chicubsfan63 <chicubsfan63@...>
      To: Myotubular_Myopathy@yahoogroups.com
      Sent: Monday, April 20, 2009 3:55:43 PM
      Subject: [Myotubular_Myopathy] www.MTMFN.com website

      I am asking families to submit their stories to me to include on a website I have started. If you get the chance, please go to www.MTMFN.com to check it out. We have some links, clinical information and the family stories. If you are interested in participating, please compose your story and add some pictures. Then send it to me at sandersjc@mac. com. I will include your story as soon as I receive it. It is my hope to develop a registry where families can check and see if another family has a child who may have the same problems. This way we can network and gain more information about this disease.

      As most of you know, my son, Joseph died from a massive liver hemorrhage. After his death we had his DNA tested and he came back as X-link. The disease probably responsible for his death is called peliosis hepatis and affects X-linked children. We had an autopsy done and are trying to draw some conclusions. Once we get the answers, we will inform the community of our findings.

      If anyone has any questions, please don't hesitate to contact us. We will talk openly about Joseph and his death.

      With Warmest Regard,

      John Sanders

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