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I will find a solution


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Danielaeh Find out more about Danielaeh
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  • I will find a solution


    I read a lot of letters about how to plan a vacation and being able to enjoy as much as possible.
    We have an 8 years old son, who has and AICD. His HOCM is Severe.
    Till know we used to take the stroller with us, and that was great with hills, museums, walking to the beach with enough power to play with the sand and enjoy during the way, feeling protected and not thinking about the heart...
    Now our son is too big for the stroller. He would love to keep using it, but his father and some people think it is not suitable ....
    So - We all love the trips we have together and always plan it in a way there will be no physical efforts. Still I worry and I want to find something instead the stroller.
    I do not want it to look like a wheelchair , I want it with colors, so my son and husband will feel comfortable...
    There are different companies developing tri-altons (?) and other accessories.
    I would like to know / hear from your experience.
    Wishes for healh, peace and love!

    Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
    Haifa - Israel.

  • #2
    Danielah - They make some jogging strollers that will hold a child up to much heavier weights, like 75 or 100 lbs. You can check it out on the internet. They are not baby strollers and would be better than a wheelchair. I have one that is made by a company called Kool Stop and mine is rated for up to 75 lbs.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


    • #3
      thank you

      Thank you for the info.
      I will certainly try something like that and was very helpful to know what to look for!
      Wishes for healh, peace and love!

      Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
      Haifa - Israel.


      • #4
        Depending on where you are going on vacation there may be scooters available, and I know kids love them! They can "drive" the scooter around and look cool while being part of the vacation.

        Good Luck!
        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)


        • #5

          Or, you could buy a scooter--they are pricey, but I expect it would last a really, really long time...



          • #6
            I am not sure what Liza meant by scooter, but it made me think of one that I see a lady riding here on campus all the time. I think it is called an electric kick scooter. Hers is tiny - looks like it would weigh about 3 kg and easily fit into a backpack. I looked on Ebay to see if they had these and only found larger ones that weigh 8 kg, but the price is right and they aren't too big. Check this page: http://search.ebay.com/electric-kick...trypageZsearch

            I would suggest a helmet, careful monitoring by parents, and knee and elbow guards if he uses this. But, he will be cool, have fun, and save his strength and energy.



            • #7
              Thank you ALL!

              We are going to try a scooter next week.
              it is one for easy travel and able to fold.
              There are a lot of options in the market.
              The problem is that here in Israel there are not many and are very expensive. even the company "Kool stop" that has jogging strollers do not bring them to Israel.
              We have family that can help and send us what we will need.
              Meanwhile we are preparing a vacation in Italy - Toscany!!!!!!
              We hope Mattan will be able to visit the Pinocchio park!!!!
              Wishes for healh, peace and love!

              Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
              Haifa - Israel.


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