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Re: [Adults AMC] Not new but new...

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  • azah mohamad
    John wrote: So, I need to clarify what my intentions with my original post. We ALL have stories about how we are treated in everyday
    Message 1 of 11 , Aug 6, 2004
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      John <jkottori@...> wrote: So,
      I need to clarify what my intentions with my original post. We ALL
      have stories about how we are treated in everyday life. The fact
      that I have achieved what I wanted to makes me look back and realize
      it didn't have to be as hard as it was. I am an extrovert by
      nature, always have been, which made up for some of my own
      shortcomings and forced me to GET WHAT I WANT. I am seriously
      interested in meeting others with AMC who are willing to extend
      themselves to others in a way only we can. Children with AMC (or
      any other disability) have it worse than we did. The ideal person
      is given to us through TV/ Movies/ Video which puts the AMC children
      in an emotional hole. That needs to be attacked. A plan needs to
      be formulated and I am willing to fly/ drive to people/ families/
      etc who could benefit from my experiences. It is important not to
      lose sight of the fact, while we have our own lives there are others
      who want to make one.
      Being a disabled man who owns his own business, teaches, and coaches
      able-bodied youths in basketball-- I have resources and ideas to
      start something special. I am not a believer that emailing or having
      a website on this subject will get the job done correctly. The most
      influential people in my life were people who I met. To see exactly
      how one carries themselves and stands for what they believe in.
      In conclusion, WE as AMC Adults need to come together first,
      discuss ideas, formulate a program, and put it to use. I wish we
      had a conference or something where this could take place. I think
      sometimes WE as adults can get caught up in our own support that we
      forget about children who are going through exactly what we did. We
      can help that. Any ideas?
      If you want to know more about my basketball program check out my
      Basektball site www.cmachawks.com. I was recently named the
      Southern New England Basketball Chair which is the highest level. I
      want to use this stature to help the above stated cause. I do not
      want to come off as arrogant but truth be told, I feel if I wasn't a
      little forceful I would have never acheived what I wanted to.

      Thank you and hope to hear back. If anyone wants to chat you can PM
      me jkottori (Yahoo).

      John


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      Dear John,

      As a mother who has a child suffering from aMC, I agree with you comment. In my country Malaysia, not everybody knows what AMC is...everytime they ask about my son, Azrul's condition, we have to explain in detail about his condition. Futhermore, at this moment in time, we are having problems sending Azrul to school, he's six years old this year.

      He is still unable to walk but he goes to pre school evrey day learning to write and read. We are still trying to find enough money in order to operate his hands and do a second operation on his legs. He has difficulty walking becoz his right leg is a bit longer than the left. Its very difficult to seek funds for operations in my country especially if the operation is to be done in a private hospital.Wr need to find as least US$15,000 for his operation.

      Our problem with Azrul now is he is getting lazy and does'nt want to do much exercise. His means of transport at home is a trycycle which is getting smaller as he is growing bigger in size. As parents we don't exactly know how to encourage him to learn to walk or use his hands to feed himself. There are times when I lose hope in ever seeing him walk or become dependent on himself in future but I still hope he will change for the better.

      P/s : I've attached a picture of Azrul for you to see.

      Yours faithfully,

      Azah






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    • JRTowner@aol.com
      I m willing to do something positive in the AMC/disabled kids lives. How about the first step being a chat amongst ourselves to discuss what we can do,
      Message 2 of 11 , Aug 7, 2004
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        I'm willing to do something positive in the AMC/disabled kids lives. How
        about the first step being a chat amongst ourselves to discuss what we can do,
        where is it going to take place, how is going to get done.

        Since logistics is a problem, I'll make a suggestion that we sign on to
        yahoo, go to this groups home page, and use the chat room to start. What's a
        good time to start? If you list a time be sure to include the tie zone, like
        if it 7 PM Eastern or 7 PM Central. What's good for everybody?
        Denise

        Dogs are not our whole life,
        But they make our lives whole.


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