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Living with Neurofibromatosis

Posted: Nov 21st 2008

Caption: Ed Port of Austintown lives with Neurofibromatosis

From Story: ‘Someone can afford to help Ed’

Videographer: William D. Lewis

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    Comments

    1 Stan (2587 comments)posted 1 year ago

    This man truly has been through a lot. God bless him for having the capacity to take on this challenge. Cures are being found everyday for a multitude of ailments. May they find one soon for him.

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    2 mmike (7 comments)posted 1 year ago

    Great job Ed. As always, you're a true inspiration.

    MM

    If anyone is interested in making a donation to help Ed, his website is http://www.edneedsamiracle.com

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    3 mmike (7 comments)posted 1 year ago

    Here are the links to Ed's articles:

    http://www.vindy.com/news/2008/nov/23/82...

    http://www.vindy.com/news/2008/nov/22/ar...

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    4 treb77 (2 comments)posted 1 year ago

    Is there nothing to be done to help this man?
    Can surgery even be done to reverse what has already happened?
    Is there not a compassionate surgeon and hospital that would do this out of the goodness of their heart?
    God forbid, that it was you or I who had this affliction and no one to turn to for help.

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    5 mmike (7 comments)posted 1 year ago

    Yes, something can be done to help Ed.

    Yes, surgery can repair Ed's face. Surgeons can remove the tumors and perform reconstructive surgery.

    Is there not a compassionate surgeon and hospital that would do this out of the goodness of their heart? We'll see. I've been trying to get this story on CNN so that Ed's story can go national and international. They are currently considering running it, meanwhile I keep pestering them.

    I'm glad that you're as outraged as I am. Please help by spreading Ed's story.

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    6 treb77 (2 comments)posted 1 year ago

    Like you said, with all the money in the world, it is a shame that someone has to live with something like Ed has. Have you really got a full price to get everything done that needs to be done? If so how much? I read the # 60K - is that official or just a guesstimate? You either need alot of everyday folks putting in a little or a couple wealthy individuals stepping up. What a wonderful present that would be!

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    7 mmike (7 comments)posted 1 year ago

    I don't know the specific of the exact cost. You'd have too contact Ed to find this out. Ed can be reached through http://www.edneedsamiracle.com

    No matter what the cost, whether it is obtained in the blink of an eye from a well endowed individual or through a collective effort spanning years, this has to happen. Ed is currently working on a 501c3 status so that there is somewhere for these funds to go. Ed is an amazing individual. I just spoke with him and he re-iterated that once he obtains his surgery, his goal is to help others with their condition.

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