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I LOVE DERRICK Find out more about I LOVE DERRICK
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  • im new to this site

    my son derrick was diagnosed with hcm in jan. 03 and we were shocked! no one in our family ever had this and now we have no idea what we should be doing to help him, he had a regular pedetrician since birth hes now 11 and she never said a thing about him having a heart problem! well needless to say she s not his dr. anymore ! i think his heart dr.is very nice but when i asked him if there was a support group for this kind of diesease he said he didnt know of any so now im here. derricks whole life was changed the day he was diagnosed,we had to move back to nyc , he was a very happy child who loved sports and since he was a litle boy , he wanted to be a pro football player, hes a straight "a" student but now he was put out of the school he was in because of the hcm they didnt have an elevator in his school and so he couldnt go there and now hes still not in school because the nyc bd.of ed. didnt have a bus for him or a class for him because of the over crowding in the public schools. hes becoming depressed and withdrawn and also hes very angry! i understand how he must feel i feel like that too because this diesease has destroyed his life and i dont know what i can do to help him live a full and happy life because of all his restrictions . any ideas would be appreciated and thank you all for this wonderful site. denise

  • #2
    Re: im new to this site

    Denise,

    Welcome to the HCMA. My first suggestion to you would be to call the HCMA office (973-983-7429) on Tuesday between the hours of 9 a.m. and 5 p.m. Eastern time. You really need to speak to Lisa, our President, who can give you a lot of information and recommendations that will improve Derrick's quality of life. We can also get you more information on HCM. Hope to hear from you on Tuesday.

    Kelly
    Life is 10% what happens to you and 90% what you do with what happens to you.

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    • #3
      Re: im new to this site

      Welcome, Denise. Yes, please do call Lisa tomorrow. She'll have lots of information for you. In the meantime, you're welcome to post here with any questions or concerns that you have. We're here to provide information and support to people who are affected by HCM. Also, let your son know that he isn't the only kid with HCM. There are lots of parents here whose children also have HCM.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: im new to this site

        Hi,

        HCM doesn't mean your child should never run, walk or play. Does he have symptoms that are preventing him from getting around? I don't know the school situation in NY but this sounds really extreme to me.

        Please talk to Lisa about getting Derrick to a specialist in NY asap so he can get treatment and you can get doctor's orders for what he can and can't do in school, which will hopefully open some doors.

        Hang in there,

        seb

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        • #5
          Re: im new to this site

          Hi,

          Welcome to this site. You will find much support here. I wanted to post a reply because I have two children with HCM and they are doing great. My kids take heart medication daily and are restricted from competitive sports, but that doesn't stop them from enjoying life. They are very involved in scouting, my son is a weblo and my daughter is a girl scout (7 years and counting). They also ride bikes, play with the kids in the neighborhood and swim during the summer. They are very active. They see their cardiac doctor every 6 months. I hope this post helps relieve some of your worries. Very important to understand the disease and to get the proper medical help. Lisa will help stear you in the right direction. If you have any questions, I'll try to help.

          Take care,
          Michelle - mom to Krista and Tyler both HCM
          Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
          Tyler surgery: 1/98 myectomy

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