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Getting The Word (HCM) Out

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leesmom Find out more about leesmom
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  • Getting The Word (HCM) Out

    My son lost his life to HCM on December 15, 2002- Thats only two days from now. It's a fight within myself everyday just to have the will to go on and this one year anniversary isn't making it any easier. However it's Lee who keeps mom going. I had no idea my son had this disease or that the same had killed my dad in 1989-Lee's sudden death has made me begin educating myself. Because this one year is coming up, I wrote a letter which was published this week in our local paper. I would like to share a little of what I put in in.
    Mom Urges Screening For Gene That Causes Sudden Death
    I explained what HCM was and that it was hereditary and that on two separater occassions doctors failed both Lee and I with information thaat could have saved my baby's life (Lee was 20 years old). I ask other moms to please have their children checked so that they wouldn't have to spend christmas at their childs graveside, as I will be doing. i gave them this Web address so they could get the information that could save them from this awful hurt. I also talked to Lee in this letter and thanked him for being my hero, his knowledge of me, his forgiveness and his stubbornes in not allowing me to give up. He has let me know that he didn't die for me to give up my life as well-and that it is him on one side and God on the other and that's what is holding me up.
    I would like to know what I can do to get the word out-I have lost my son but maybe I can help another Mom from losing hers. If anyone has any suggestions please let me know. And please say a prayer for me that I'll make it through the next couple of days as well as the hollidays.
    Sincerely

    Meshelle Davis
    Leesmom
    [email protected]

  • #2
    Re: Getting The Word (HCM) Out

    dear mechelle,

    the first year without our nearest is always the hardest. the pain never goes away entirely, but the rawness of the first year without my dad was the worst.

    please e-mail lisa, the HCMA president, for information on what you can do to help out.

    writing to the American Heart Association and asking them why the don't have any programs for HCM would be one, but your letter to your local paper was a huge thing and i would encourage you to do more of the same/similar with all your regional papers on a regular basis.

    all the best,

    s

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    • #3
      Re: Getting The Word (HCM) Out

      Dear Meshelle,
      My heart continues to ache for you and your family. This Christmas may be harder than last year as you were still in shock at that time, no doubt. Please continue to lean on your support structure, family, friends, and counseling groups. We are all here for you, too! I know that God will continue to comfort you and bring you peace. Lee has a big job to do in heaven, watching over you! Keep the faith and know that in time you will be able to do more with your new knowledge than anyone else! The steps you take with letters to the local papers will turn to letters to national organizations and spearheading groups to demand screenings! You are the best person for the job to advocate heart health for our youth. My prays are with you and yours during this monumental first anniversary...always the hardest, and most painful. Take time for you and find some peaceful moments to heal your pain.

      Blessings to your dear one!

      For me this is the fourth Christmas without Anthony, he too was 20 when he died from undiagnosed HCM. The holidays and anniversaries don't seem to get easier, the pain becomes dull, less sharp. The rhythm of life just takes over. I can't believe at times that my life goes on without him, but then other times I know only that I must continue. All the steps and actions taken today will surely save other parents from the pain that you and I have experienced.

      We may not have genetic testing for some time, so the Anthony Bates Foundation continues to promote echocardiogram testing in our youth. Just recently we completed production of our first educational video, "What is HCM?" that is targeted to high school and college athletic programs and parents. My sister, Diane, lives in Alabama and is trumpeting this video to area schools and business. Our hope is to start 2004 with a big push to build HCM awareness in area schools and to foster the need of the heart screening events in your state, too.

      When you are ready I am sure our paths will cross!

      God Bless you and keep you till then,
      Love and Light,
      Sharon Bates

      www.AnthonyBates.org

      Comment


      • #4
        Re: Getting The Word (HCM) Out

        First of all Meshelle & Sharon I am so sorry for both of your losses. I cannot imagine your grief. A couple of suggestions for getting the HCM word out is to line up speaking engagements with lots of your community groups, Kiwanis, Elks, Lions, churches. Most communities have one or all of these. The more people you can touch with your personal story the better. It is very difficult that first time but does become easier. I am out doing this not only to let people know about HCM but am trying to promote organ donation ( I am now waiting for a heart). If you can touch just one person that may be the one who would donate a defibrillator to the school, or fire department. It may save one life. Good luck to you and God Bless.
        Midge

        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
        ICD&Pacemaker 1996
        Heart transplant March 19, 2004 @ Mayo Rochester
        Mom of Kaye.

        Comment


        • #5
          Re: Getting The Word (HCM) Out

          Dear Meshelle.

          May peace and healing surround you on this the first anniversery of your loss.

          Peace,

          Leon
          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness

          Comment


          • #6
            Re: Getting The Word (HCM) Out

            Dear Meshelle,

            You and your family will be in my prayers. I can't imagine how you must feel. May God Bless you and comfort you through this difficult week.

            I'm sure you are probably already aware of this newsletter, but just in case, I will post it anyway, since you asked for ideas in "getting the word out." Holly is a really nice gal whom I have exchanged emails with on another website. As with this site, I continually admire the work that she does to help raise community cardiac awareness for routine testing of our young athletes. Here is just an excerpt from her newsletter: The Pulse and her organization: A Heart For Sports. The URL is:

            http://www.storesonline.com/site/ahfs/page/198530

            With warm regards and lots of hugs,

            Laurie


            THE PULSE - EDITION 3 - DECEMBER 9, 2003



            FROM THE DESK OF HOLLY MORRELL,



            Holly Morrell, Executive Director, A Heart for Sports


            With passing of fall and the rapidly approaching winter season, AHFS is involved in a frenzy of activity literally across the nation. We continue to fulfill our commitments to the Northern California communites.

            I would like to take this opportunity to personally thank Kevin Purcell, father of Nate Purcell, whose life was tragically lost to sudden cardiac death. Kevin’s friendship, support and encouragement prior to, during and following the San Jose Earthquake event was immensely appreciated. In memory of Nate, Kevin continues to find any way he can to raise public awareness so that more young lives will be spared from sudden cardiac death.

            In November, I flew to Columbia, South Carolina to represent AHFS in the community where recently four young athlete’s lives were lost to sudden cardiac death. While there, AHFS participated in a screening for a group of local athletes. As part of my visit, I met personally with Pat Sims, the mother of Vic Sims, Dutch Fork High School All Star basketball player who passed tragically from sudden cardiac death on April 30th of this year. In an effort to turn tragedy into hope for other families, Vic’s mother, friend Fannie Simmons and the rest of Vic’s family have been sponsoring fund raising events in memory of Vic and on behalf of AHFS. Pat Sim’s story is published within this edition of “The Pulse.”

            The Sims, along with Dutch Fork High School and other concerned parents from the Columbia, South Carolina community are hosting a cardiac screening event for local student athletes. The Sims and Dutch Fork High School have raised funds to offer screenings to the athletes of Dutch Fork High AHFS conducted this screening on December 3, 2003.

            I was tremendously touched by the courage, strength and dedication that the Sims and other South Carolina parents have shown in their effort to raise public awareness in hopes of sparing other families the needless loss of loved ones. Their willingness to take an assertive and proactive approach offers additional inspiration to me and to AHFS as we press on with our mission.

            “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” ~ Margaret Mead, anthropologist.

            As the holidays approach, AHFS will continue to persevere in fulfilling the need for more cardiac screenings across the nation. The number of young people we can screen is only limited by the amount of funds we receive. Please continue to support our efforts by providing funds.

            Our fund raising site at: www.storesonline.com/site/ahfs is available for online contributions and support through purchases of gifts and sporting goods by clicking on our brand name affiliate’s links throughout our website. Whenever items are purchased by clicking these links our brand name affiliates such as Adidas, Oshmans, Rawlings, Major League Baseball, National Football League, etc. will forward a portion of each sale to AHFS which will be used to provide cardiac screenings to more young people. These brand name affiliates offer great holiday gifts and while you shop, you’ll know that you are also contributing to saving more young lives from sudden cardiac death.

            I’d especially like to wish all of you a very happy holiday filled with warmth, family and joy. This holiday season and into the New Year, I, along with the staff of AHFS will continue in our hope to bring….

            …..”Peace of mind….one heart at a time.”

            Best wishes for a VERY HAPPY HOLIDAY!

            Sincerely,

            Holly Morrell
            Executive Director
            A Heart for Sports

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