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lizpandabear Find out more about lizpandabear
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  • make a wish

    Hi my name is Elizabeth I have an 16 year old son with Hypertrophic Cardiomyopathy he is getting his wish granted and I was woundering if any one has been on make a wish trip what do we expect?
    My the way Michael is doing great once again he went throgh surgery to get his teeth fixed it tock more then 3 hour's they worked on 21 teeth all together .

    thankyou
    liz

  • #2
    I'm glad that Michael is doing so well. I don't have any info on Make A Wish. I'm glad he was selected. What has he chosen?

    Reenie
    Reenie

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

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    • #3
      Only a few children I know have been a part of the Make a Wish program, I suggest great caution to those interested in using this program. Yes, Make a Wish is a wonderful program and they offer amazing programs for children. The message a child receives from having a wish granted can be mixed and this is where I suggest great caution. I am aware of several families who had wishes granted by similar organizations and the kids were between 12-14, the kids had significant problems after the wish was granted. In one case the child thought the parents were hiding information and thought that he was going to die... he did not understand that the organization granted wishes to "children with life threatening conditions"...which HCM does fall under. This child did attempt to take his own life. I know of a seperate family with a similar situation.
      Michael has had a difficult few years, I do hope you are clear with him as to the reason for his wish and that he is very likely to live a normal life span with his HCM- even if a transplant is needed, he had a very good chance at a normal life.
      On the other side... I know family with a 7 yr old who had a myectomy last summer and was granted a trip to Disney in FLA...it was a very positive experience for this family thus far.
      Best wishes,
      Lisa
      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)

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      • #4
        Make-A-Wish is only one of several organizations that try to provide a wonderful experience for a child who is facing a potential life-threatening condition. The people behind these organizations are most compassionate and want only to provide something to help bring the whole family thru a situation that is so often totally unbearable and unimaginable. I have spoken with representatives from different of these organizations over the past several years and they are well aware of the possibility of emotional reprecusions if a child is not prepared and educated properly about their gift. I would urge caution and careful planning with a lot of discussion among all involved before accepting a gift. Don't allow the glamour of the moment to cloud the future needlessly. The key is to understand that it is a POTENTIAL life-threatening condition. All family members and friends, esp the parents and affected child must understand this.

        Liz, I'm so glad to hear Michael is doing well. Keep us posted, thinking of you all. Linda

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