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Alto. Offline
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Unhappy Team Emily - August 19th 2010, 12:00 PM

I have never realized how much a life could be impacted by a muscular dystrophy until I met a girl who has to deal with it every day. One of my best friends has a muscular dystrophy that doesn't allow her full control of her joints. By the time she'll be forty-five, she will have lost complete motion in her arms and in her legs. A cure isn't going to come out until she is about sixty.
Emily has told me about her friends that she has met at the MDA(Muscular Dystrophy Association) camp, and I want to do all that I can to help make these kids' lives better.
A girl that I go to school with, who I have always just passed off as a brat, isn't going to be able to walk in less then a year. Kelly and I hung out when we were little, then she started acting like a brat to me. Now she is in consent pain, and is in a wheelchair, as she will be for the rest of her life. She has two little sisters, and a little brother. She knows that there is a very likely chance that they also have this muscular dystrophy. How can you stay mad when you have that knowledge?
All these kids that Emily has told me about have made me realize how lucky my family and I are that we haven't had to deal with any of this first hand. Emily is extremely lucky that she will be able to walk until she is in her mid-forties. Most of the kids at the MDA camp were in wheelchairs.
Always remember how lucky you are if you don't have anything like this in your life. It destroys the lives of so many.


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Re: Team Emily - August 19th 2010, 09:55 PM

It is good to hear some one cares. When you are told that in a few years your not going to be able to walk. You get angry and lash out at those people you know care. It is good that you under stand that it is difficult and know that you are lucky to not have to worry about loosing your legs


Wish





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Re: Team Emily - August 20th 2010, 04:01 PM

Hey there,

This thread really made me smile! It's nice to see people say how lucky they are and actually take the time to learn about different conditions. It's pretty amazing that you want to help to improve the children's quality of life. However, people don't always understand. Why? Because they have never had to go through anything that those with muscular dystrophy have, and unless they actually suffer it themselves most likely they will never fully understand.

Don't hesitate to message me if you ever want to talk.
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Re: Team Emily - August 21st 2010, 03:35 AM

Well thank you so much. This story means a lot.

We hear so much tragic news filtered through our televisions, but what we miss out on are the precious gems of our society. Like a muscular dystrophy camp...that sounds nothing short of incredible. It's an amazing concept that a person will always have a supporter somewhere in this world...


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Re: Team Emily - August 21st 2010, 01:58 PM

I think it's great to see this post, it shows people care about others with MD. Though I don't know anyone with MD or have it, I still feel compassion for those people and i think it's great to see that there is a place where they can connect and help each other out..


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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Re: Team Emily - August 21st 2010, 02:40 PM

that is a really good story it says alot about ur heart and what u care about and want to learn more about that is really touching story and it makes u realize that u shouldnt be so uptight about people when u dont know what is going on in there lives
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Re: Team Emily - August 21st 2010, 02:56 PM

They are lucky to have this strain of Muscular Dystrophy. Trust me.

My little brother has the most sever strain, Duchenne, and has been in a wheelchair full time since he was 12. And now cannot lift his arms, his mobility is seriously deterioting and has done rapidly in the past few year, it has also gave him a lot of learning difficulties, so sometime it is like talking to a 5 year old, sometimes not. He is lucky in a way, since he is 18 and reasonably healthy for someone with this condition at his age. I know that another boy in dundee (where i'm from) that had the condition passed away this January, aged 21, and two boys from Arbroath 17 & 19, passed away this year also. This strain normally only effects boys and most dont make it past their mid twenties.

As for the likely chance of them having it, there are genetics tests to see if they have it or not. I know that I'm not a carrier as I had tests done when I was 6 years old, although they aren't meant to do them till "I" ask at 16 or over. My parents werent happy with this decision and said they're rather know the answer for when I ask them.

What strain does this person have? Sorry I'm just curious.

Your friend is lucky in a way.
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Re: Team Emily - August 24th 2010, 05:41 PM

Does anyone else know anyone with this disorder, sorry I know its not my thread but I'm intrigued and have made posts about this before the reset a long time ago.
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Re: Team Emily - August 24th 2010, 09:34 PM

Quote:
Originally Posted by Vlora View Post

What strain does this person have? Sorry I'm just curious.

Your friend is lucky in a way.
She's told me before, but I can't remember the name. It's something long and smart sounding.

I'm so sorry about your brother.


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Re: Team Emily - August 24th 2010, 09:41 PM

Thanks

If anyone wants more info on it you can go to here
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