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RE: [Myotubular_Myopathy] Greetings from another part of the world!!

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  • Wendy
    Hi Kevin Thank you for sharing your story and welcome to the group – we are very pleased that you have made yourself known. The blog is great - what an
    Message 1 of 7 , Jan 11, 2007

      Hi Kevin

       

    • Wendy
      Hi Kevin, just reading through your email again – I noticed you’re in contact with several other families. How fantastic! Would love to hear more about
      Message 2 of 7 , Jan 11, 2007

        Hi Kevin, just reading through your email again – I noticed you’re

        (Message over 64 KB, truncated)

      • TONI ABRAM
        Hello Kevin Good to see you here. Toni xx
        Message 3 of 7 , Jan 13, 2007
          Hello Kevin 
           
          Good to see you here.
           
           
          Toni xx
           
           
           
        • Kevin
          Evelyn is in PICU now, but was just extubated and becoming stable. This is her 8th time in ICU. I believe you all went through that kind of process for many
          Message 4 of 7 , Jan 18, 2007
            Evelyn is in PICU now, but was just extubated and becoming stable.
            This is her 8th time in ICU. I believe you all went through that kind
            of process for many times.

            I just read about the CoughAssist machine and the Noninvasive
            Mechanical Ventilation which helps Zak improve his lung function
            greatly. I was also impressed when reading Dr. Bach's story.
            (http://www.doctorbach.com/healthstate/story.htm) All your
            information gave me a lot of hope and inspiration. Dr. Bach's method
            seems very helpful to our kids with neuromuscular diseases so I'm
            really interested. Do we have anyone who ever went to Dr. Bach's
            Center? How do you evaluate his therapy?

            I'm talking to Evelyn's doctor about using CoughAssist machine and
            learning Dr. Bach's NIV method. We have been on TV news and
            interviews for several times, so it helps when we try to promote
            something here. Anyway I still have lots to catch up and learn from
            you.

            Kevin



            --- In Myotubular_Myopathy@yahoogroups.com, "Wendy" <wendyhughes@...>
            wrote:
            >
            > Hi Kevin
            >
            > Thank you for sharing your story and welcome to the group ?we are
            very
            > pleased that you have made yourself known. The blog is great -
            what an
            > absolutely beautiful song ?I think it will give inspiration and
            comfort
            > to many! Evelyn looks a beautiful girl and you must be very proud
            of
            > her. I sincerely hope she is doing well right now. It looks too
            like
            > you have been televised at some stage? Is this correct? Are there
            many
            > other families in Taiwan with MTM/CNM? It would be wonderful to
            reach
            > out to more families.
            >
            > You may know too that we are very soon to begin some new research
            for
            > MTM in Europe too ?funded by the Myotubular Trust (a registered
            > European charity) so please do keep in contact because we have some
            > important announcements to make soon in early February.
            >
            > Meanwhile, I really hope that you find the parents on this website
            (of
            > which I am one ?having an 11 year old boy with x-MTM) really helpful
            > and Alan Beggs and the USA resources really helpful too. If there
            are
            > any questions, please ask.
            >
            > Best wishes to Evelyn and all of your family and its so nice to meet
            > you.
            >
            > Wendy, Simon, Sophie (12) and Zak (11) , UK
            >
            > (and Co-Founding Director of Myotubular Trust
            > http://www.myotubulartrust.com <http://www.myotubulartrust.com/> )
            >
          • patsarah2006
            Kevin, I am sorry to hear your little one is in the hospital. Our son, Adam, is a patient of Dr. Bach s because we live in Northern New Jersey. Dr. Bach does
            Message 5 of 7 , Jan 19, 2007
              Kevin,
              I am sorry to hear your little one is in the hospital. Our son, Adam,
              is a patient of Dr. Bach's because we live in Northern New Jersey. Dr.
              Bach does a lot of international traveling so you should contact him to
              look you up if he is in Taiwan. You can also find out a lot about his
              recommendations from his book (which is posted on his website). We use
              the Cough Assist with Adam and it has currently replaced chest
              percussions, nebulizers (except during severe respiratory illness) and
              all the wrestling it takes to get a young child to comply with all that.

              We also do daily range of motion with Adam with either the Cough Assist
              or a manual recussitator with a mouth piece (we use the adult size Ambu
              bag). Regards. Sarah Foye
            • Kevin
              Evelyn just came back from her 8th hospitalization. Her recovery went well and dosne t need any oxygen. We came back with a new CoughAssist provided by local
              Message 6 of 7 , Jan 26, 2007
                Evelyn just came back from her 8th hospitalization. Her recovery went
                well and dosne't need any oxygen. We came back with a new CoughAssist
                provided by local vendor. Since both our doctor and vendor have no
                clinical experience using this machine on children we will start from
                15/15 pressure. I hope Evelyn can get along with her new friend. If
                things go well we'll increase the pressure gradually.

                There are 7 children with MTM in Taiwan. Most of them are under 3
                years old. 3 girls including my Evelyn, and 4 boys which of the
                oldest is 14 yrs old. These families were isolated until Evelyn's
                story and her website being reported. I also worked with the Taiwan
                Foundation for Rare Disorders
                (http://www.tfrd.org.tw/english/index.php) to help raising social
                awareness through TV interviews, PR events, and giving speeches in
                schools.

                The social welfare is poor in Taiwan so there are still lots to do
                and lots to change on our own. Sadly, many families gave up those
                kids or put them into hospice. I saw one family searching for hospice
                then changed their minds to raise their kid in their home, after
                getting support and information from Evelyn's website. I learned that
                we can really make things different even just by sharing and
                supporting. That's why I really appreciate a place like this yahoo
                group where people are warm and inspiring. I learned a lot here and
                am trying to share helpful information to other Taiwan families who
                may not understand English very well.

                There are doctors, nurses, patient families, and many others
                constantly reading Evelyn's blog, which has nearly one thousand visit
                daily. When we started to share information about what I found here,
                they're interested as well. I believe what advances somewhere in the
                world may make things different in another part of the world. Thank
                you whoever contributes in this big family!

                Kevin

                --- In Myotubular_Myopathy@yahoogroups.com, "Wendy" <wendyhughes@...>
                wrote:
                >
                > Hi Kevin, just reading through your email again ?I noticed you're in
                > contact with several other families. How fantastic! Would love to
                hear
                > more about what you are doing in Taiwan. Is there a specialist
                > researcher there, or any research ongoing in Taiwan for MTM that you
                > know of? You are welcome to email me on my personal email:
                > wendyhughes@...
                > Best wishes
                > Wendy, UK
                > Co-founding Director of Myotubular Trust www.myotubulartrust.com
                > <http://www.myotubulartrust.com/>
                >
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