> 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).
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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.
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