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Dear Lisa, Thank you for the work you do...


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  • Dear Lisa, Thank you for the work you do...

    Dear Lisa,
    Thank you for the work you do on Hypertrophic Cardiomyapthy. As I told you previously in email, I lost my beautiful 24 yr old son Jan. 20, 2003 to this disease. He was 6'3' about 240 #. He did very hard work. He had no systems of this disease. We just recieved the autopsy results this week. We have so many questions. He found out John probally inherited this from us.
    We are very upset the State "retained " his heart!? John was not married, we were his next of kin. I feeel like they should have asked us or at least warned us that it was necessary to keep his heart. We thought
    the state autopsy returned my beautiful son intact so we could bury him. Do you know what they do with his heart? Where do they store it? How long do they keep it?
    As I said we have so many questions. Thank you in advance for any thing you can do.
    Sincerely Vicki

  • #2
    Re: All visitors-- please read this posting

    Vicki -
    Call me.
    We need to talk.
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)


    • #3
      Re: Dear Lisa, Thank you for the work you do...

      Vicki, I'm so sorry to hear of your loss. I can only imagine the frustration and hurt you must feel after receiving all this news from the state. Talk with Lisa as soon as you feel ready, you will be glad you did. You and your family are in our thoughts and prayers. Linda


      • #4
        Re: Dear Lisa, Thank you for the work you do...

        Dear Vicki,
        I am so sorry for your loss. Your son, John sounds like he was a wonderful young man. I hope you will share more about him in the future.

        I too lost my son, Anthony, age 20, to undiagnosed HCM. He died after a workout at Kansas State Univerisity where he was a football player, honor student and a wonderful man headed for a great life. You can find more out about Anthony from our web-site, www.AnthonyBates.org He was my only child and still to this day we don't know which side of the family tree he may have picked up HCM. Anthony's HCM could have been a "spontaneous mutation" according to the HCM experts. But, that is the main reasons we continue to do regular heart screenings for my nieces and nephews.

        Please let me know if there is anything I can do for you and your family. You can respond on the message board, send me a PM or email. This road is hard, but best not traveled alone. I pray that you and your family have a good support structure and network of friends. It's okay to lean on people now through the tough times. My prayers are with you now and always.

        God Bless you and your beloved son, John.
        Sharon Bates
        Anthony's Mom


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