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How do you get on tv to tell a story & reach out to other mothers & doctors

I have been fighting with doctors for over 3 yrs. about my son. I finally found a doctor who listen to me.( A mother knows best when it comes to their child.) My son was just diagnosed with Batten's Disease this month. He is going to die. It is so rare there is no cure or treatment. I was told for over 3 yrs. he is fine & they labled him with different minor things & would push me out the door. & now it is a major thing & I am just so upset. I hope this doesn't happen to anyone else it is soooo sad. Thanks

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Asked by butterflie83 at 10:31 PM on Sep. 17, 2009 in Kids' Health

Level 1 (0 Credits)
Answers (12)
  • wow

    Answer by mommymeg03 at 10:32 PM on Sep. 17, 2009

  • Oh no....I am SO sorry. You can consider pitching this story to a local news agency? They might cover it but more than anything, seek support groups online for Batten's and connect with other families who can relate to you and help you through this time. : (

    Answer by jeanclaudia at 10:34 PM on Sep. 17, 2009

  • TLC! and i know bc i watch it all the time. i think u get paid for it too.. BTW im so sorry to hear that sweetie. what is his symptoms? if u dont mind me asking. but TLC has a show called missed diagnosis or something like that. where they are told by doctors they are fine, and cant figure out diagnosis well look it up on i hope u figure it out. im sorry sweetie. but whats his symptoms?.. my mom has an eye problem where she has lost 50% of her vision not even in a YEAR! yet.. they even sent her to DUKe university to a specialist still canft find out the diagnosis she may be blind before we even figure it out.

    Answer by SweetiePieAfWf at 10:35 PM on Sep. 17, 2009

  • Also, you might blog about it so that people all over the world can read your blog and learn from your experience/child's experience and links to support and info. is free and a place to start.
    People would really appreciate hearing your story and it would get the word out to both parents and perhaps physicians. Good luck.

    Answer by jeanclaudia at 10:39 PM on Sep. 17, 2009

  • here ya go hun. this is examples of shows of MYSTERY DIAGNOSIS

    Answer by SweetiePieAfWf at 10:40 PM on Sep. 17, 2009

  • omg please look at this read this

    its about the disease it says a later disease same thing called partys disease....same as my mom is having.. omg she losing her vision. i hope this isnt what she has. help send me a mssg. tell me more info if u get a chance plz. im worried now..

    Answer by SweetiePieAfWf at 10:58 PM on Sep. 17, 2009

  • Call or e-mail CNN, MSN and all your local news agency's They WILL pick up on a story like this. Hell write Oprah! She would love to help get the word out. I'm VERY sorry for your family. {{HUGS}}

    Answer by vbruno at 11:21 PM on Sep. 17, 2009

  • First off, I am very sorry also. Get it out as much as possible. Write a letter and send it to every talk show, news channel, local and national, write about it on here and other websites. Like someone else said, TLC, Discovery Health.. everything! Best of luck to you and your family. Again, very sorry.

    Answer by ashleyuc07 at 11:39 PM on Sep. 17, 2009

  • sorry to hear this. MAybe call Discover Health? HAve you thought of filing charges against the other doctors to a medical review board. I would.

    Answer by pagirl71 at 10:29 AM on Sep. 18, 2009

  • oh my God! I am so sorry!!! I really don't know what else to say. You don't know how much I wish there was something better I could say or something i could do :'( It is more then sad. Yes the PP's had rly good suggestions.
    HUGS!! And knwo that you and your son are in my prayers!! Agian I am really just so sorry for you all :'(

    Answer by xomommy25 at 7:30 PM on Sep. 18, 2009

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