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  • mailis.hagen
    my name is mai-lis hagen. i live in norway and have a son name markus, he is 5 yrs old living with myotubular myopathy.. school boy next year.. he is
    Message 1 of 24 , Nov 22, 2007
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      my name is mai-lis hagen.
      i live in norway and have a son name markus, he is 5 yrs old living
      with myotubular myopathy.. school boy next year.. he is ventilated at
      night and all day without. he is doing great :)
      it was great to find a site like this :)

      wishing you all the best.. please email me if there is somebody out
      there : kr.sandjenta@...

      see also pictures under markus in pictures
    • Scott & Betsy Grant
      Dear Mai-lis, Hello and welcome to the group! My name is Betsy, I have a son who is 11 years old and is on a vent for 18/24 hours and is doing well. Tell us
      Message 2 of 24 , Dec 3, 2007
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        Dear Mai-lis,
        Hello and welcome to the group! My name is Betsy, I have a son who is 11 years old and is on a vent for 18/24 hours and is doing well. Tell us more about yourself and Markus. There are many kind and knowledgable people on this group who can help answer questions you may have and offer support.
        kind regards
        Betsy

        On Nov 22, 2007 4:45 PM, mailis.hagen <mailis.hagen@...> wrote:

        my name is mai-lis hagen.
        i live in norway and have a son name markus, he is 5 yrs old living
        with myotubular myopathy.. school boy next year.. he is ventilated at
        night and all day without. he is doing great :)
        it was great to find a site like this :)

        wishing you all the best.. please email me if there is somebody out
        there : kr.sandjenta@...

        see also pictures under markus in pictures


      • mbeelen00
        Hi I m Marian and we live in Holland. We have a son Jeno and he is 7 years old who has MTM. He s also doing great; can walk a little and doesn t need
        Message 3 of 24 , Dec 3, 2007
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          Hi
          I'm Marian and we live in Holland.
          We have a son Jeno and he is 7 years old who has MTM.
          He's also doing great; can walk a little and doesn't need
          ventilation yet.
          He's on "normal" school with a little bit extra support.
          He loves his school and his friends.
          He also love dinosaurus and pokemon.
          He hate doing things that are difficult for him.....
          So, welcome tot the MTM club.....

          Marian


          --- In Myotubular_Myopathy@yahoogroups.com, "mailis.hagen"
          <mailis.hagen@...> wrote:
          >
          > my name is mai-lis hagen.
          > i live in norway and have a son name markus, he is 5 yrs old
          living
          > with myotubular myopathy.. school boy next year.. he is
          ventilated at
          > night and all day without. he is doing great :)
          > it was great to find a site like this :)
          >
          > wishing you all the best.. please email me if there is somebody
          out
          > there : kr.sandjenta@...
          >
          > see also pictures under markus in pictures
          >
        • Amanda Hollingsworth
          Hi Mai-lis. I believe you and I have corresponded before. I m glad to hear that Markus is doing well. My son, Jacob, is doing great, too. He will be 6 years
          Message 4 of 24 , Dec 3, 2007
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            Hi Mai-lis. I believe you and I have corresponded before. I'm glad to hear that Markus is doing well. My son, Jacob, is doing great, too. He will be 6 years old in February.
             
            It is good to hear from you.
             
            Amanda Hollingsworth

            Scott & Betsy Grant <scottnbets@...> wrote:
            Dear Mai-lis,
            Hello and welcome to the group! My name is Betsy, I have a son who is 11 years old and is on a vent for 18/24 hours and is doing well. Tell us more about yourself and Markus. There are many kind and knowledgable people on this group who can help answer questions you may have and offer support.
            kind regards
            Betsy

            On Nov 22, 2007 4:45 PM, mailis.hagen <mailis.hagen@...> wrote:
            my name is mai-lis hagen.
            i live in norway and have a son name markus, he is 5 yrs old living
            with myotubular myopathy.. school boy next year.. he is ventilated at
            night and all day without. he is doing great :)
            it was great to find a site like this :)

            wishing you all the best.. please email me if there is somebody out
            there : kr.sandjenta@...

            see also pictures under markus in pictures




            Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

          • DARLENE MILLER
            Hi Mai lis, Welcome to the group. My name is Darlene and I have two grandsons with xlmtm. Kyle will be 6 years old this month and Connor is 2 years old.
            Message 5 of 24 , Dec 3, 2007
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              Hi Mai lis,
               
              Welcome to the group.  My name is Darlene and I
              have two grandsons with xlmtm.  Kyle will be 6 years
              old this month and Connor is 2 years old.  Kyle goes
              to regular school and uses the vent at night and when
              he is sick.    Connor is on the vent most of the day and
              all night.  Both boys are doing great.
               
              Take care,
              Darlene
               
              ----- Original Message -----
              Sent: Thursday, November 22, 2007 4:45 PM
              Subject: [Myotubular_Myopathy] hello

              my name is mai-lis hagen.
              i live in norway and have a son name markus, he is 5 yrs old living
              with myotubular myopathy.. school boy next year.. he is ventilated at
              night and all day without. he is doing great :)
              it was great to find a site like this :)

              wishing you all the best.. please email me if there is somebody out
              there : kr.sandjenta@ hotmail.com

              see also pictures under markus in pictures

            • Dana
              Hi Mai-lis!! My name is Dana and I have 2 sons. Corey is 18 yrs old and unaffected and Cason is 4 1/2 yrs old with MTM and doing great. I am still debating on
              Message 6 of 24 , Dec 3, 2007
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                Hi Mai-lis!!

                My name is Dana and I have 2 sons. Corey is 18 yrs old and unaffected
                and Cason is 4 1/2 yrs old with MTM and doing great. I am still
                debating on sending Cason to school next year. I am sure you can relate
                to me being nervous since your son will be starting school next year
                also. Cason is also ventilated only at night. I look forward to hearing
                more about you and Markus and am glad you found us!!
                Take care...Dana

                --- In Myotubular_Myopathy@yahoogroups.com, "mailis.hagen"
                <mailis.hagen@...> wrote:
                >
                > my name is mai-lis hagen.
                > i live in norway and have a son name markus, he is 5 yrs old living
                > with myotubular myopathy.. school boy next year.. he is ventilated
                at
                > night and all day without. he is doing great :)
                > it was great to find a site like this :)
                >
                > wishing you all the best.. please email me if there is somebody out
                > there : kr.sandjenta@...
                >
                > see also pictures under markus in pictures
                >
              • Wendy
                Hi Mai Lis, It’s so lovely to hear from you and hear and see that Markus is doing so great! I hope you are very well too? Remember we met you and Markus in
                Message 7 of 24 , Dec 4, 2007
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                • patsarah2006
                  Dear Mai-lis, Greetings and welcome to the Yahoo group! We are glad that you found us. Our son Adam is 6 years old and, like your son Markus, is on a
                  Message 8 of 24 , Dec 5, 2007
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                    Dear Mai-lis,
                    Greetings and welcome to the Yahoo group! We are glad that you found
                    us. Our son Adam is 6 years old and, like your son Markus, is on a
                    ventilator only at night. He also uses a CoughAssist machine in order
                    to suck out the secretions any time that he has a head cold or
                    bronchitis, to help prevent him from getting pneumonia. During the day
                    he attends mainstream school, with the assistance of an aid/nurse
                    within the classroom. He is a great kid.

                    We suspect that he has the autosomal recessive form of this condition:
                    His muscle biopsy (done at 13 months old) very clearly showed a
                    myopathy with the myotubular/centronuclear pattern, but his overall
                    level of severity has been milder than that of most boys with XLMTM (X-
                    linked myotubular myopathy) and his genetic testing was negative for
                    the mutations of XLMTM.

                    We love and appreciate all of the support and information that we have
                    gained through this Yahoo MTM group since we joined about two years
                    ago. It is a fantastic global support network filled with people who
                    care and can help offer perspectives on how they have faced similar
                    challenges. The group also inspires us to work together with patients,
                    families and researchers worldwide to help find treatments for
                    myotubular/centronuclear myopathy. WELCOME!!!!

                    -Patrick Foye (and Sarah and Adam) in New Jersey, USA

                    --- In Myotubular_Myopathy@yahoogroups.com, "mailis.hagen"
                    <mailis.hagen@...> wrote:
                    >
                    > my name is mai-lis hagen.
                    > i live in norway and have a son name markus, he is 5 yrs old living
                    > with myotubular myopathy.. school boy next year.. he is ventilated
                    at
                    > night and all day without. he is doing great :)
                    > it was great to find a site like this :)
                    >
                    > wishing you all the best.. please email me if there is somebody out
                    > there : kr.sandjenta@...
                    >
                    > see also pictures under markus in pictures
                    >
                  • Sheallyn
                    Welcome to the group! What form of MTM does your son have, our little one Kaden is X Linked. take care, Sheallyn :
                    Message 9 of 24 , Dec 5, 2007
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                      Welcome to the group! What form of MTM does your son have, our little
                      one Kaden is X Linked.

                      take care,


                      Sheallyn :<)
                    • Shannon
                      Hello Mai-lis (and Markus!) I am Shannon and my son, Javad just turned 6 in November. Javad is also off the vet most of the day (he does like it when he naps)
                      Message 10 of 24 , Dec 6, 2007
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                        Hello Mai-lis (and Markus!)

                        I am Shannon and my son, Javad just turned 6 in November. Javad is
                        also off the vet most of the day (he does like it when he naps) and is
                        on the vent at night to sleep.

                        I was looking at the pictures of Markus and he reminds me of Javad.
                        Same smiley face! :)

                        I am glad that you have found this site...this group is great! Welcome!

                        Shannon
                      • Toni Abram
                        Hello Mai-Lis My name is Toni and I live in the UK. My father and I have been diagnosed with Dominant Centronuclear Myopathy. Welcome to the group. Toni xx
                        Message 11 of 24 , Dec 16, 2007
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                          Hello Mai-Lis
                           
                          My name is Toni and I live in the UK.  My father and I have been diagnosed with Dominant Centronuclear Myopathy.
                           
                          Welcome to the group.
                           
                           
                          Toni xx
                           
                           
                          ----- Original Message -----
                          Sent: Thursday, November 22, 2007 9:45 PM
                          Subject: [Myotubular_Myopathy] hello

                          my name is mai-lis hagen.
                          i live in norway and have a son name markus, he is 5 yrs old living
                          with myotubular myopathy.. school boy next year.. he is ventilated at
                          night and all day without. he is doing great :)
                          it was great to find a site like this :)

                          wishing you all the best.. please email me if there is somebody out
                          there : kr.sandjenta@ hotmail.com

                          see also pictures under markus in pictures

                        • khutchings23
                          today my lil guy started to move head by himself! we were told with the severity of this muscel disease he would no be venalator dependant and he is doing
                          Message 12 of 24 , Dec 19, 2007
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                            today my lil guy started to move head by himself! we were told with
                            the severity of this muscel disease he would no be venalator dependant
                            and he is doing great breathing on his own without anyhing and that is
                            a plus! we live day by day with kaleb and to the fullest!
                          • Toni Abram
                            Hello Kami and Kaleb Welcome to the group. Lovely to hear the news about your lil guy. Merry Christmas. Toni xx ... From: khutchings23 To:
                            Message 13 of 24 , Dec 24, 2007
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                              Hello Kami and Kaleb
                               
                              Welcome to the group.
                               
                              Lovely to hear the news about your lil guy.
                               
                              Merry Christmas.
                               
                               
                              Toni xx
                               
                               
                              ----- Original Message -----
                              Sent: Thursday, December 20, 2007 5:27 AM
                              Subject: [Myotubular_Myopathy] hello

                              today my lil guy started to move head by himself! we were told with
                              the severity of this muscel disease he would no be venalator dependant
                              and he is doing great breathing on his own without anyhing and that is
                              a plus! we live day by day with kaleb and to the fullest!

                            • mai-lis Hagen
                              my son have x-linked also, i have been a year loosing the contact and adress to this group, but i found it again now.. :) so im strongly back, markus is doing
                              Message 14 of 24 , Jun 17, 2008
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                                my son have x-linked also,

                                i have been a year loosing the contact and adress to this group, but i found it again now.. :)

                                so im strongly back,

                                markus is doing well.a few problems with a new tracheostomy tube, but with some advice i get here im sure he will have the best tube for him.

                                its really great to see a active forum like this :)

                                 

                                all the best mai-lis hagen

                                --- On Wed, 12/5/07, Sheallyn <sheallyn73@...> wrote:

                                From: Sheallyn <sheallyn73@...>
                                Subject: [Myotubular_Myopathy] Re: hello
                                To: Myotubular_Myopathy@yahoogroups.com
                                Date: Wednesday, December 5, 2007, 8:44 PM

                                Welcome to the group! What form of MTM does your son have, our little
                                one Kaden is X Linked.

                                take care,

                                Sheallyn :<)


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