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    #16
    This is what My son left in DC

    Leif is right, personal stories make a difference. This is what my son left behind in DC.


    Sean Tyler
    Maryland



    Hi, my name is Sean and I am 14 years old. I am in the 8th grade at SJA in ______, Maryland My mom has a spinal cord injury. I have never known her without the paralysis because she was hurt before I was born. My mom does things that most moms do but she has to find new ways to do them. Something’s she can’t do and I wish she could. When we went snow inner tubing she couldn’t get up and down the inner tube slopes. She did get to ski though using a bi-ski.

    My mom helps other people who have spinal cord injuries. She listens to their stories and she tries to find them help, rehabilitation and she lets them know there is hope. Sometimes I listen when she takes calls. I want a job like her when I grow up, helping people. My mom hopes that one day there will not be a need for jobs like she has. I hope so too.

    I have a type of paralysis too, cerebral palsy. Today, most people don’t notice it and I don’t either. For 9 years I got most of my food through a tube in my stomach because I could not swallow. The paralysis messed up the muscles in my throat. When I was one, the doctor told my mom and dad I had spastic quadraparisis. The doctors told them all the things I would never do. My parents never gave up hope and worked with me a lot. Today I do lots of things, I play baseball, football, and I am in a regular class at school and have lots of friends. The doctors said I would not walk, have very little use of my hands and my speech would be hard to understand. My mom and dad just didn’t listen.

    I want you to get the Christopher Reeve Paralysis Act out for a vote and to make it happen. Christopher Reeve always made things happen and he gave people hope. The CRPA will help with research, resources, rehabilitation and the VA research.

    Paralysis hits the whole family, even the kids. My life is good but I know my mom hopes for more. Please help it happen. Thank you for meeting with our group today.

    GO FORWARD,
    Sean
    Every day I wake up is a good one

    Comment


      #17
      Originally posted by Leif

      Bet’ this really opens up your and Lynnifers discussion in the other thread as for you two to go on TV like CNN world news and so on, right? You should send an update to the TV hosts as for this news, I’m sure some of them could see the importance of it. Looking forward to the TV show, it can be done with all this ammo you guys has now you know
      Leif, you could be right. If this goes through it is prime for a media spin. Maybe even if it doesn't, if we can get their attention...

      Cheesecake, your son's letter brought tears to my eyes. Thank him for me!
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

      Comment


        #18
        Cheesecake - Sorry for all this, pretty strong stuff, it got through my thick skin plenty. I don’t know what to say but I sincerely think this is the way to go how bad it may seem as for to be heard. I mean to tell about problems, because problems there are, one can’t shovel that one under the carpet just like that. Thanks to your son too, a brave young man, and hopefully some lucky day such personal stories we have now will be redundant in the future. Not yet tough, let us help you, your son and all of us in a united push for the better. - I myself know a few parents with kids with some of the issues discussed here, one of those parents have a lovely girl which just became a teenager with a high neck injury, most of them I know also want to do things like you describe above here when it comes to advocacy for a cure, but as we know, it takes so much energy to do the daily routines which is more than one can bear and thereby also many don’t have the energy surplus to do it regardless of how much one want to, so thanks for your strength when it comes to a push for the better for all of those, I am quite sure they are forever thankful for such advocacy – And Cheesecake like I see it, we will never give in before our goals are achieved, never… Please excuse me for bunching around in different threads here but things like this I take very serious and will work hard for and are doing so as for the frontiers we face over here. Good luck to you and all the rest of you in your determinant work for the better.

        Comment


          #19
          Are the congressmen who are not our personal representative going to care what we think? Cubsfandc said last time that the constituents of those members should call.
          Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

          Comment


            #20
            Originally posted by leschinsky
            Are the congressmen who are not our personal representative going to care what we think?
            Yes--they are in key leadership roles. The call in day in November to the 3 key committee members and Rep. Bilirakis led by Bostondad made a big difference. The 4 offices were counting calls.
            Last edited by Susan M; 5 Dec 2006, 9:39 PM.
            Please submit your photo and story of hope:

            http://bridges2hope.unite2fightparalysis.org/


            http://unite2fightparalysis.org/

            Comment


              #21
              I'm so stoked.

              Comment


                #22
                Originally posted by KiranA
                I'm so stoked.
                Any scary burglars are :---)

                Comment


                  #23
                  Originally posted by Leif
                  Bet’ this really opens up your and Lynnifers discussion in the other thread as for you two to go on TV like CNN world news and so on, right? You should send an update to the TV hosts as for this news, I’m sure some of them could see the importance of it.
                  Leif took the words right out of my mouth .. although I'm not going on national television!!! But a great idea to contact media ... get the public awareness activated. Paralysis can happen to anybody ... we're all living proof. Everyone should have a vested interested in this.

                  Larry King:
                  http://www.cnn.com/feedback/forms/form5.html?12

                  ETA: Cheesecake, your son's letter is precious!
                  Last edited by lynnifer; 5 Dec 2006, 9:38 PM.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    #24
                    The Role of an Elected Official

                    leschinsky,

                    I hear what you are asking but I have my own version of what it is all about. This is the United states Of America and I truly believe that on this issue these people represent the whole country. The CRPA and the funding and support of stem cell research isn't the same as supporting Native American casinos in your state or nfastrucuture improvements like the BIG DIG. These are issues that directly or indirectly affect every citizen in this country. If a politican can't see or understand this than they do not deserve to be in an elected position. (Think Global Warming) Their role is to support the greater good for all citizens and to secure a safe and healthy environment for everyone.

                    Don't let them send you away with the message to call your state representative, that is a cop out. Lets go get em!

                    Comment


                      #25
                      Great news sure I was off line all day what great news to come on care cure to hear....
                      Be always determined in Life and Love

                      Comment


                        #26
                        Originally posted by lynnifer
                        .. although I'm not going on national television!!!
                        Sure you are, and this is not national television, just CNN world news. My recorder is warming up as we speak so I can send a copy to all the politicians over here. Don’t worry, we have just a couple of hundreds of them in our parliament - don’t know about the UK, Italy, Germany, Spain, China, India and so on tough.

                        Comment


                          #27
                          Very awesome news! Congrats to all who have worked so hard to make this happen and went the extra mile.

                          Cheesecake, what a great letter by your son.

                          Comment


                            #28
                            Cheesecake, your son's letter is spectacular! You must be so proud.

                            Great news on the CRPA, we'll keep on keepin' on. Deb

                            Comment


                              #29
                              Haster Office--IL

                              Hey, we need folks from IL to call HAstert's office. They are not keeping tally and urging folks to call their own Congressman. If you are from IL, please call Hastert--NOW.
                              Everyone else has been great.
                              Every day I wake up is a good one

                              Comment


                                #30
                                I get a kick out of calling when they're all warmed up. It's so quick and easy. 12 minutes for all those calls!

                                Me: Can I speak to the person that deals with health legislation?

                                Them: Sure. Your name?

                                Me: Betheny Winkler

                                Health Aide: How can I help you?

                                Me: I'd like to encourage the Congressman to support the Christopher Reeve Paralysis Act. We finally got it out of committee and it should come up for a vote this week. It benefits more than 2 million Americans, through research, rehab and quality of life grants administered through the NIH. Please, this would help improve so many of our lives.

                                Them: OK. I'll make a note of it.

                                Me: Is there anything else you'd like to know about it?

                                Them: No, I think we've about got that one covered.

                                Me: OK, thank you very much!

                                And that's how it goes...If they ask what organization, feel free to say Unite 2 Fight Paralysis if you want. You can also say grassroots advocate or volunteer advocate for the Christopher Reeve Foundation.

                                Nathan Deal's guys voicemail is full, so you can email him at

                                brandon.clark@mail.house.gov
                                Blog:
                                Does This Wheelchair Make My Ass Look Fat?

                                Comment

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