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Ideas needed


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Jillmgk Find out more about Jillmgk
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  • Ideas needed

    I have posted on here before, when my son was tentatively diagnosed with HCM, which they are now saying is NOT HCM, but is an athlete's heart. Anyway, my big 13 yr old wants to play middle school football this fall, and I was talking to the coach Friday. They do not have an external defibrillator device available for practices- they are only there for games becasue paramedics must be present at all times for games. (My son is cleared for all sports and we will have an echo again prior to practice even starting, just to be sure- this is for all kids, not just mine!) Anyway, we discussed the need to have this for all of the sports there and are looking into ways to get the school to obtain this- through private donation or the school board. Any suggestions on where to start? I figured that someone here has taken on that task at some point! Thanks in advance for any suggestions you may have.

    mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

  • #2
    Hi, Jill. There are several people here who have worked ot get AED's in schools and available for all sports activities. Below is a link to a high school senior's successful (VERY SUCCESSFUL) campaign to raise money for these AED's. She also gives names of groups that helped her. For yourself, is there a chance that you can do a fund-raiser to get the funds to buy one? I know that www.amazon.com sells them online, as do many other places. They're about $1500 for one. If you could raise money, you could purchase one and donate it to your son's school. That won't help the high school when he transfers, but it's a start. Best of luck. I'm sure others will post to help you soon.



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


    • #3
      Give me a call on Tuesday I have a few ideas for you.

      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)