Loading ...
Sorry, an error occurred while loading the content.

Re: [Myotubular_Myopathy] (unknown)

Expand Messages
  • redscootee@webtv.net
    Sue Tell us a little bit about yourself. Your message came through fine this time. I am a 52 yo female and am a manifesting carrier of mtm. If you have any
    Message 1 of 19 , Jan 1, 2004
    • 0 Attachment
      Sue Tell us a little bit about yourself. Your message came through fine
      this time.
      I am a 52 yo female and am a manifesting carrier of mtm. If you have any
      questions feel free to ask.
      Great group of ppl. You will enjoy this group.
      take care pat
    • redscootee@webtv.net
      tinabeana24, Sorry it took me awhile to reply. I am a 54 y/o female who is a manifesting carrier with x-linked myotubular myopathy. We can only trace it back
      Message 2 of 19 , Jun 23, 2005
      • 0 Attachment
        tinabeana24,
        Sorry it took me awhile to reply.
        I am a 54 y/o female who is a manifesting carrier with x-linked
        myotubular myopathy. We can only trace it back to my mom. She exhibited
        signs of xmtm but she passed away before we had a firm dx.
        If you have any questions feel free to ask.
        take care pat
      • Agnes Vajda
        Hello Anne! It is a good idea. I will ask for it by the doctors. I think the matter (trouble) is our insurance-system. Thank for your answer: Agnes Anne
        Message 3 of 19 , Mar 5, 2006
        • 0 Attachment
          Hello Anne!
           
          It is a good idea. I will ask for it by the doctors. I think the matter (trouble) is our insurance-system.
           
          Thank for your answer:
           
          Agnes

          Anne McAuliffe <anne@...> wrote:
          Dear Agnes
          We are in the UK, and as in Switzerland all our equipment and supplies are paid for, as well as nursing care at home.  As Hungary is part of the EU I wonder if you have any way of arguing that Ben's human rights are being violated by not being provided with the level of care elsewhere in the EU?
          The very best of luck, this is hard enough without state help
          Best wishes
          Anne


          From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of nadine schwendimann
          Sent: 04 March 2006 19:44
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: RE: [Myotubular_Myopathy] (unknown)

          Hello Agnes
           
          We are parents of Mael (9 month) and we are living in Switzerland. - Here in Switzerland the insurance have to pay everything - machine and nursery (14 hours a day)...
           
          We had to learn all the thing about the caring of a tracheostomy and a g-tube and since october 05 we have our boy home....
           
          I'm very sad to read that you have to look yourself about a ventilator... and I hope you'll find someone here, who can help you!
           
          If there's something I can do to help - let me know... sadly we are not able to do money-support but maybe we can inform you about our vent (it costs about 18'000 Swiss-Franks) or inform us about possibilities to help you (trusts or something)! (if you're interestet: mael has a homepage... but it is all in german: www.mael.ch.vu)
           
          Let us know how you and your son are doing!
           
          nadine

          Agnes Vajda <bondargika@...> schrieb:
          Hi Everyone!
           
          I'm Agnes from Hungary having a son, Ben (6 months). Ben has x-linked mtm. He is still in hospital, needs 24hrs vent. The doctors say if we want to bring him home we have to buy a ventilator and manage the home care. It is a very rare and expensive thing here in Hungary.
          Please, write me, how did you do it? How works it in your coutries?
           
          Thanks very much
          Ben & his parents
           
           
          p.s.::
          Could anyone explain (write) me what NISSEN mean. I don"t find this word in the dictionary


          Yahoo! Mail
          Use Photomail to share photos without annoying attachments.


          Telefonieren Sie ohne weitere Kosten mit Ihren Freunden von PC zu PC!
          Jetzt Yahoo! Messenger installieren!


          Yahoo! Mail
          Use Photomail to share photos without annoying attachments.

        • angela huss
          Dear Agnes, Hello! My son had MTM, a g-tube, vent/trached and a nissen. He had acid reflux really bad. A Nissen is a surgery procedure that involves the
          Message 4 of 19 , Mar 5, 2006
          • 0 Attachment
            Dear Agnes,
            Hello! My son had MTM, a g-tube, vent/trached and a nissen. He had acid reflux really bad. A Nissen is a surgery procedure that involves the stomach being tied off enough that a child can't breathe in food or drink. (Asperate it) There is a website that I really like its: www.tracheostomy.com imformative website for parents and children dealing with tracheostomies and care of a trach. You may even put your children and there story on it. Best of luck! Sincerely, Angie


            Agnes Vajda <bondargika@...> wrote:
            Hello Anne!
             
            It is a good idea. I will ask for it by the doctors. I think the matter (trouble) is our insurance-system.
             
            Thank for your answer:
             
            Agnes

            Anne McAuliffe <anne@...> wrote:
            Dear Agnes
            We are in the UK, and as in Switzerland all our equipment and supplies are paid for, as well as nursing care at home.  As Hungary is part of the EU I wonder if you have any way of arguing that Ben's human rights are being violated by not being provided with the level of care elsewhere in the EU?
            The very best of luck, this is hard enough without state help
            Best wishes
            Anne


            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of nadine schwendimann
            Sent: 04 March 2006 19:44
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: RE: [Myotubular_Myopathy] (unknown)

            Hello Agnes
             
            We are parents of Mael (9 month) and we are living in Switzerland. - Here in Switzerland the insurance have to pay everything - machine and nursery (14 hours a day)...
             
            We had to learn all the thing about the caring of a tracheostomy and a g-tube and since october 05 we have our boy home....
             
            I'm very sad to read that you have to look yourself about a ventilator... and I hope you'll find someone here, who can help you!
             
            If there's something I can do to help - let me know... sadly we are not able to do money-support but maybe we can inform you about our vent (it costs about 18'000 Swiss-Franks) or inform us about possibilities to help you (trusts or something)! (if you're interestet: mael has a homepage... but it is all in german: www.mael.ch.vu)
             
            Let us know how you and your son are doing!
             
            nadine

            Agnes Vajda <bondargika@...> schrieb:
            Hi Everyone!
             
            I'm Agnes from Hungary having a son, Ben (6 months). Ben has x-linked mtm. He is still in hospital, needs 24hrs vent. The doctors say if we want to bring him home we have to buy a ventilator and manage the home care. It is a very rare and expensive thing here in Hungary.
            Please, write me, how did you do it? How works it in your coutries?
             
            Thanks very much
            Ben & his parents
             
             
            p.s.::
            Could anyone explain (write) me what NISSEN mean. I don"t find this word in the dictionary


            Yahoo! Mail
            Use Photomail to share photos without annoying attachments.


            Telefonieren Sie ohne weitere Kosten mit Ihren Freunden von PC zu PC!
            Jetzt Yahoo! Messenger installieren!


            Yahoo! Mail
            Use Photomail to share photos without annoying attachments.


            Yahoo! Mail
            Use Photomail to share photos without annoying attachments.

          • TONI ABRAM
            Hello Angie I always said if I got my degree, I would go for a BA but now after, I think it is 6 years of doing this and working fuull time, I am finding it
            Message 5 of 19 , Apr 3, 2008
            • 0 Attachment
              Hello Angie
               
              I always said if I got my degree, I would go for a BA but now after, I think it is 6 years of doing this and working fuull time, I am finding it quite tiring.  Maybe if I get through this, I need to take a year off but then I wory that I won't go back.
               
              This link goes to the survey:  http://www.smart-survey.co.uk/v.asp?i=5063vqcex.
               
              And this is where I am writing about the progress of the project:  http://tonilouisa.wordpress.com/.
               
              Good luck to you if do continue with your studies and thank you for taking the survey.  I have designed this to try and help me gauge, which one of a number of ideas to follow through on but if you don't have any knowledge of a particular topic, skip it and move on.  It should take no more than 10 minutes to complete.
               

               

               

            • WANDA SANTORY
              You are inmy prayers. It s never easy. Call me if you need help in any way. ... From: Connie Guinn To: Connie Guinn
              Message 6 of 19 , Sep 20 5:21 AM
              • 0 Attachment
                You are inmy prayers. It's never easy. Call me if you need help in any way.

                ----- Original Message ----
                From: Connie Guinn <kookla_g@...>
                To: Connie Guinn <kookla_g@...>
                Sent: Saturday, September 20, 2008 2:09:35 AM
                Subject: [Myotubular_Myopathy] (unknown)

                Hi everyone:
                 
                Ben came home from the hospital today!!!!  YAY : )      He has been there for 10 days with pneumonia- through the hurricane and all- (even spent his 6th birthday up there- we had a "hurricane party"!). 
                 
                We were without power for 5 days at our home,  and we had  water damage in our house; but nothing as big as many are facing.  
                 
                Please pray for the rest of our communitiies. .. there are still about 1.5 million people without power/water/ food in the Houston area... and this place is wickedly HOT.  A lot of people are startijng to get really sick from these conditions.. . I don't feel so well, myself.
                 
                Love,
                Connie
                 
                   
                 

                "Whatever weakens your reason, impairs the tenderness of your conscience, obscures your sense of God, takes off your relish for spiritual things, whatever increases the authority of the body over the mind, that thing is sin to you, however innocent it may seem in itself".

                 

                -John Wesley's mother



              Your message has been successfully submitted and would be delivered to recipients shortly.