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Re: [Myotubular_Myopathy] New to this group need some help

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  • redscootee@webtv.net
    Connie, Sounds like your family is very supportive. You are right! Benjamin does sound like he is a very bright young man. Looking forward to hearing more
    Message 1 of 14 , Oct 31, 2003
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      Connie,
      Sounds like your family is very supportive.
      You are right! Benjamin does sound like he is a very bright young man.
      Looking forward to hearing more about your family.
      I gave info on my family on my reply to Tina.
      Meant to ask her too does anyone else in your family have mtm? We think
      my mom did but she passed away before we were dx'd 13 years ago. We have
      just had a firm dx of mtm for 5 years.
      take care pat
      <a href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide World of
      MD</a>
    • smashintwo66
      Hi Tina, My name is Shannon. My son Javad is turning 2 tomorrow (Nov.1) and I just joined this group a week ago. My son had been misdoagnosed for the last 20
      Message 2 of 14 , Oct 31, 2003
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        Hi Tina,

        My name is Shannon. My son Javad is turning 2 tomorrow (Nov.1) and
        I just joined this group a week ago. My son had been misdoagnosed
        for the last 20 months and we were just told of his new diagnosis
        (centronuclear myopathy)last friday. In some ways this has been the
        longest week ever. This group is wonderful! I can't tell you how
        great it has been to have other people to talk to that truly
        understand the shoes you are wearing! I know how challenging it can
        be to have other children in the house. We also have 3 others (2 in
        high school and one in 5th grade) and they are all wonderful!
        Scheduling around games, homework, etc. Whew! They all adore
        Javad. Javad seems to be doing pretty well according to what I am
        gathering. He is not trached, has only been on a vent once, has a g-
        tube (his "buddy"). He can sit up on his own for a bit (it used to
        be about 30 minutes, but he had a setback with a broken leg) and is
        pretty active. I would love to talk to you more. I check the site
        every night. I feel like it's my time to be connected. :)

        Talk to you soon!

        Shannon

        PS Thanks to everyone else. You've been great!
      • redscootee@webtv.net
        Shannon, Welcome to the group. It can be very stressful when you first get a dx. There is not a lot out there and it just seems the unknown makes it hard. If
        Message 3 of 14 , Oct 31, 2003
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          Shannon, Welcome to the group. It can be very stressful when you first
          get a dx. There is not a lot out there and it just seems the unknown
          makes it hard.
          If you have any questions please feel free to ask. I gave our intro in
          Tina's email.
          Javad sounds like he is doing quite well. Happy Birthday. Wow 2 enjoy
          the time sure seemed to fly with my two.
          take care pat
        • Jessica Juckers
          Hi Tina, I am glad you found this group, the people here are amazing, and let you know you are not alone. I have a son who, Jack who is 14 months old. He has a
          Message 4 of 14 , Nov 1, 2003
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            Hi Tina,

             

            I am glad you found this group, the people here are amazing, and let you know you are not alone.

            I have a son who, Jack who is 14 months old. He has a G-tube, Trachy is on a Vent.

             

            We were told the same thing, that it was unfair to keep Jack on support as we had a 4 year old at the time to think about, we do not have home nursing here in Australia. So its hard to get support..

             

            I hope to hear more about you and your family,

             

            Take care

            Jessica

             

            Jacks webpage : www.caringbridge.org/oceania/jack

             

             

            -----Original Message-----
            From: miracleshappenant01 [mailto:miracleshappenant01@...]
            Sent: Thursday, 30 October 2003 7:01 AM
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: [Myotubular_Myopathy] New to this group need some help

             

            Hi everyone, my name is Tina Katz and I live in Monroe, CT  with my 4
            sons and husband.  My baby Anthony not a baby anymore has Myotubular
            Myopathy MTM1.  He is 21/2 years old now and I am so very proud of
            him.  At birth we had no idea that anything was wrong until I
            delivered and he wasn't breathing on his own.  He was trached and
            given a G-tube at 3 months.  Prior to that I was told that Anthony
            would have brain damage and it would be a unfair life for him and my
            other 3 boys if we kept him on life support.  Well with the support
            of our family and God's love we knew what the right thing to do was. 
            He knows about 30 signs, he is so active and catches on so quickly to
            act out all the nursery rymes.  I guess in 2 years I never knew these
            groups existed.  It would be great to be able to talk to another mom
            that truly can say I know what your going through.  Please let me
            know if this is how I am supposed to communicate. 
            Thank You so much,  Tina




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          • connie guinn
            Hi, Pat! Yes, my immediate family is very supportive (husband, daughter, myself). As far as extended family goes- it is varied. We moved 9 hours away from
            Message 5 of 14 , Nov 1, 2003
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              Hi, Pat!
              Yes, my immediate family is very supportive (husband,
              daughter, myself). As far as extended family goes- it
              is varied. We moved 9 hours away from all of our
              family (due to husband's job change) just 3 months
              before Benjamin was born. Most everyone came down
              when he was born and were supportive at the time,
              however, not living near him has skewed that original
              intent. I have even had close family suggest that
              after all these months I might reconsider taking my
              son off of the ventilator or maybe 'putting him in
              some kind of a HOME'. I know they are trying to think
              of what would be best for us- but, what about
              Benjamin? What about what's best for him? This
              saddens me that they view him the way a lot of medical
              personnel in the past (and present) viewed him- of
              course, a lot of them are medical personnel...
              As far as family history goes, it is very strange. My
              mother's family has a long history of male babies
              dying after birth: my great grandmother had 11 infant
              boys die shortly after birth, my grandmother had 1
              male neonate die shortly after birth, my mother had
              one male infant die, my aunt had 3 singleton male
              neonates and 1 set of twin male neonates die shortly
              after birth- in addition she had another set of male
              twins and one died shortly after birth, the other one
              is my cousin, John. She also had a set of girl twins.
              In 1987, one of these twins- my cousin, Shelly, had
              a male baby- who was very premature- who died 4 hours
              after being born. In 1989, she had a full term baby
              boy who was having trouble breathing. He was admitted
              to the NICU in a Missouri Children's hospital- 3 mos
              later, he was diagnosed with centro nuclear myopathy,
              and Shelly was told there was no hope for him
              (Gregory) and that they should be 'humane' and turn of
              the ventilator. They agreed at first, but she
              couldn't stand it and she made them re-intubate him.
              Several more times they pressured her to take him off,
              but each time, she had them put the tube back in. The
              last time this was done, Gregory surprised them all
              and began to breathe on his own! An hour later, he
              was still breathing on his own, and 3 days later, he
              was still breathing with no assistance! So, he was
              discharged to their home with a portable suction
              machine and an NG tube. They had him home for
              approximately 4 mos when a tragic thing happened.
              While in the car, their portable suction machine broke
              down. Sadly, by the time they could get him anywhere
              for help, it was too late- he aspirated and died.
              Then, the children's hospital contacted Shelly and
              said they were doing research on centro nuclear
              myopathy and that it was very rare. In fact, they
              were the "ONLY FAMILY IN THE USA REPORTED AS HAVING
              THIS" and they were certainly "THE ONLY FAMILY IN THE
              USA WITH A FAMILIAL LINKAGE OF CNM" So, they
              requested blood from everyone in the family who was
              sill alive, and they tested us. Using linkage
              analysis, they reported who was and was not a carrier.
              My mother was reported as a carrier. So were one of
              my sisters and I. Remember though, this 'research'
              was done in 1989, and the MTM1 gene was not discovered
              until 1996. Well, at the time, I was 17 years old,
              far removed from the rest of my mom's family (my
              father was in the military). In fact, I never knew
              this cousin of mine at all. Essentially, I tucked
              away this information on a back burner of my mind. I
              got married in 1994, and my daughter was born in 1995.
              In August of 2000, the children's hospital in
              Missouri re-contacted my cousin to tell her that they
              were going back over old research and they realized
              that all of the testing had been done incorrectly and
              that all of the results were skewed and wrong and that
              if we wanted to know real (true) results, we would
              have to get retested. Only, now they weren't't doing
              research anymore so we would each have to be tested at
              the U. of Chicago at the cost of $3,000 each.
              Knowing that no one had the money for this, and
              thinking that no one except she and her husband were
              interested, she told only one aunt about being
              contacted. In Sept of 2000, I became pregnant again.
              I was elated! it had been 6 long years of trying
              with no avail. The genetic testing done 11 years
              earlier was not on my mind at all- I had completely
              forgotten. My mother, however, did not, and she
              worried incessantly (to herself). Finally, she told
              my sisters her fear, and they approached me. 'How
              silly,' I thought. 'Such worriers!' When the first
              ultrasound revealed that I was carrying a boy- they
              really fretted. I brushed them casually aside,
              thinking, 'have they nothing better to do?' Our
              insurance did not cover the genetic testing from Uof
              Chicago. 'Just as well,' I thought. I mean, who wants
              to go through 5 more months of being pregnant, all the
              while KNOWING that something is wrong with their
              child? Not me. So, on June 21, 2001, my son, Elijah,
              was born! He was so beautiful and tiny and thin and
              floppy and... he wasn't breathing. 'This is not real.
              It isn't happening- it will all go away soon,' I
              thought. Then I watched while, for 30 minutes, my
              precious child was 'bagged', all the while being
              coaxed to breathe by the nurse who was squeezing the
              bag. I wanted to jump off of the bed and help him-
              his seemingly lifeless body kept puffing up off of and
              then, alternately, sinking back down onto the isolette
              with each contraction of the am-bu bag. Finally, the
              pediatrician arrived. (There are no major medical
              facilities where he was born). Elijah was swaddled
              quickly and placed in my arms for a few brief seconds.
              I could finally see his tiny little face, his thick,
              jet black hair, his beautiful long hands. I called
              out to him and he opened his eyes! Yes, he even
              turned his head in our direction, and he opened his
              mouth as if to cry- but no sound came out, only
              silence. All the while his color was becoming more
              and more dusky. He was whisked away and I was left
              numb, wondering what had just happened. Suddenly, I
              thought of LeeAnn- where was she? I needed to hold
              her. I wanted to be the one to tell her about her
              brother. My brother-in-law had taken LeeAnn and her
              cousins out to eat. I demanded to go to the nursery
              to see my son. When I arrived, I saw this big (22
              inches long) boy with this tiny frail body, hooked up
              to so many machines and wires. He looked so perfect,
              so peaceful. I asked to hold him. When he was placed
              in my arms it felt as if he were a hollow toy with
              some sort of battery-operated mechanism inside (the
              ventilator). I immediately fell in love! All around
              me was sadness- everywhere I looked. From family, to
              the nurses, to visitors, to the physicians- all were
              grim-faced or weeping, but I was smiling. I was
              proud! the doctor came over and told me that there
              was no hope for him. I just stared at him blankly. He
              said that my son would not live. 'Where is LeeAnn?' I
              thought again. She was so looking forward to having a
              baby brother- now what will she do? I don't want
              anyone else to tell her! Besides, they are wrong. We
              will just wait this out until morning- it will all be
              fine. But all evening long, people kept coming in
              weeping as if they were saying goodbye to him, in
              fact, they were saying 'goodbye' to him and 'I'm
              sorry' to us. The next morning, we were told that he
              was just barely alive. He was dying, cellularly,
              before our eyes. That it would be so much nicer for
              us if we could remember holding him without all the
              wires and tubes attached, but we only had a window of
              opportunity to do this, because he was slipping away
              minute by minute. We kept pushing the decision off
              longer and longer. But they were relentless. We were
              so tired and confused and scared. We didn't want our
              baby to die- and we certainly did not want to be the
              decider's of such fate. But, these are the
              'professionals'. Don't they know what they are
              talking about? Even family members who have medical
              backgrounds said things looked grim. Do we not have
              any support? Are we fools for not wanting what seemed
              so obviously right to all the 'knowledgeable' people?
              We argued to the last minute and persisted in 'just a
              little while longer' until we were exhausted.
              Regrettably, we relented, and our sweetie baby was
              extubated, and the machines were turned off. They
              handed him to us- he just kept looking up at us, his
              eyes moving back and forth from one of us to the
              other. We held him and rocked him and sung to him and
              prayed over him and cried for him for what seemed like
              only seconds... Soon, he was turning a different
              color. Is this real? LeeAnn ran to get the rest of
              the family; the rest of the time, Elijah was passed
              around from one person to the next, as each one took
              turns holding him and rocking him and weeping over
              him. I held him and held him and held him. I have
              never cried so much or so intensely in my life. I
              can't even tell you when it was that he passed- there
              was no definite moment. All together we had him alive
              with us for only 23 1/2 hours. A man from the funeral
              home came to get him, and we had to sign papers. I
              looked over at the isolette where he had lain, and I
              saw a small, square-shaped, bundle wrapped in the
              blankets used to line the isolettes. I walked over
              and laid my hand on the bundle- it was firm, a very
              snug wrap. But it definitely held the form of a small
              body. I knew this was what was left of my son. I
              turned away with bitter tears and a broken heart. An
              hour later, I walked out of the hospital with his
              packed diaper bag, my overnight bag, the balloons I
              had received during labor, and my daughter in my arms.
              Remorse? Regret? Constant sheering pain? Wishing
              for a second chance? A never- ending ache? Wondering
              how in the world so much could have occurred in so
              little time? Wondering how such a previously avid
              anti-euthanasia person could come to such a result?
              Me, too. It was all so sudden and so quick. We were
              so pressured and felt so isolated, alone, and
              powerless. Mix that with the extreme exhaustion, and
              emotional turbulence that go along with childbearing,
              and maybe there's an answer. Maybe I can now look not
              so judgmentally on those who have made similar
              choices. Maybe this experience made us strong enough
              to fight for Benjamin- no matter what. I believe
              things happen for a reason. I don't know what all the
              reasons are, but in the end, it all works out- doesn't
              it? Six months after Elijah was born, I became
              pregnant again. At 4 months, I found out it was a
              boy. At 6 months, we had a major career adjustment
              and we ended up moving- 9 hours away from our
              families. Benjamin was born on Sept 12, 2002 in a
              major city, near a major children's hospital. We had
              no idea going into the labor whether or not he would
              be affected, but we were prepared. We told them the
              possibilities, what the old literature says, what the
              reality is, what we wanted, and what they were to do-
              if he was affected. Because of this, they prepared
              the neonatology team and we planned an induction date.
              Benjamin, however, had other plans! He came 3 days
              before the planned induction!! Even so, the neo team
              was prepared- even at 1 am! He was intubated 6
              minutes after being born. He was in the NICU for 2
              1/2 months before he finally came home with us. He
              is an absolute treasure and a joy! A lot of hard
              work, too, but aren't all good things? I say, YES!!!
              Tonight is my night up with him- we do not have
              nurses on the weekends. Godspeed.
              -Connie
              --- redscootee@... wrote:
              > Connie,
              > Sounds like your family is very supportive.
              > You are right! Benjamin does sound like he is a very
              > bright young man.
              > Looking forward to hearing more about your family.
              > I gave info on my family on my reply to Tina.
              > Meant to ask her too does anyone else in your family
              > have mtm? We think
              > my mom did but she passed away before we were dx'd
              > 13 years ago. We have
              > just had a firm dx of mtm for 5 years.
              > take care pat
              > <a
              >
              href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide
              > World of
              > MD</a>
              >
              >





              __________________________________
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            • dhahjh
              Tina, HI! I am glad you found this group also (I am also happy that it has been so active lately), because I love communicating with other mtm parents. Your
              Message 6 of 14 , Nov 2, 2003
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                Tina, HI! I am glad you found this group also (I am also happy that
                it has been so active lately), because I love communicating with
                other mtm parents. Your story sounds much like ours. My son,
                Jacob, was born at 40 gest. age. We had no indication that anything
                would go wrong (although we knew my family history, but of course
                thought, "It will never happen to us!"). His doctor also told us
                that it would be best for us to take him off the vent, but from what
                we knew from my family history, these boys live happy, productive
                lives; there was no way we were letting that happen. The ONLY
                reason he was on/off the vent so much in the beginning was because
                he kept aspirating his oral secretions, so we began pushing for a
                trach and g-tube, and he finally got it at 5 weeks of age. He came
                home 10 days later and it has only been uphill since. He is know 21
                months (as of tomorrow) and is just as sharp as a tack. He just
                amazes me more and more everday with his intelligence and humor. I
                read were Connie said that Ben falls over purposefully when they try
                to sit him up. Jacob did/still does the same thing and he just
                thinks it is so funny. He will also fall back when I am holding him
                on my lap. He is also acts out "Itsy-Bitsy Spider" and "Twinkle,
                Twinkle Little Star".

                Your family sounds divine, but you must be one busy mom! WOW! Four
                boys. I just have my Jacob and I feel overwhelmed sometimes, but I
                won't complain anymore; I will just think of you :-)
                Again, it is great to be able to chat with you. I hope we can keep
                this board busy. I like it especially because it is such a small
                group.

                Take care, Amanda (Jacob's mom)

                --- In Myotubular_Myopathy@yahoogroups.com, "miracleshappenant01"
                <miracleshappenant01@y...> wrote:
                > Hi everyone, my name is Tina Katz and I live in Monroe, CT with
                my 4
                > sons and husband. My baby Anthony not a baby anymore has
                Myotubular
                > Myopathy MTM1. He is 21/2 years old now and I am so very proud of
                > him. At birth we had no idea that anything was wrong until I
                > delivered and he wasn't breathing on his own. He was trached and
                > given a G-tube at 3 months. Prior to that I was told that Anthony
                > would have brain damage and it would be a unfair life for him and
                my
                > other 3 boys if we kept him on life support. Well with the
                support
                > of our family and God's love we knew what the right thing to do
                was.
                > He knows about 30 signs, he is so active and catches on so quickly
                to
                > act out all the nursery rymes. I guess in 2 years I never knew
                these
                > groups existed. It would be great to be able to talk to another
                mom
                > that truly can say I know what your going through. Please let me
                > know if this is how I am supposed to communicate.
                > Thank You so much, Tina
              • dhahjh
                Connie, That is so fantastic that Ben can talk above his trach. Jacob has always made sounds above his, but never said anything. He now wears a passy-muir
                Message 7 of 14 , Nov 2, 2003
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                  Connie, That is so fantastic that Ben can talk above his trach.
                  Jacob has always made sounds above his, but never said anything. He
                  now wears a passy-muir valve and has always made preliminary
                  sounds. He also says "Hi", "uh-huh", and "huh-huh" - very cute. We
                  are trying so hard to get him to talk and he actually mouths the
                  words sometimes, but is having a hard time putting sound to it. He
                  does know many signs, for which I am very thankful. He has no
                  problem telling us exactly what he wants. Jacob also like to be
                  hung upside down. His face will turn bright red and he just keeps
                  signing, "more, more, more!". Too cute!

                  Amanda (Jacob's mom)


                  --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
                  <kookla_g@y...> wrote:
                  > Hi, Tina! My name is Connie. I live in Texas with my
                  > husband, son, and daughter. My son, Benjamin, now 13
                  > mos old, was born with mtm. He was floppy at birth
                  > and unable to breathe and so was intubated. A month
                  > later he was trached and given a g-tube. We were told
                  > that he wouldn't live to be 1 year old. He is
                  > incredible! He is such a delight- so loveable! His
                  > big sister, LeeAnn, adores him- she is his second
                  > 'mom':o) Benjamin talks above his trach; he says
                  > 'mama', 'dada', 'no-no', 'baba', 'wa-wa-wa', etc. He
                  > is working on sign language and can sign'eat' and
                  > "mother' and 'father'. He loves books and being read
                  > to. He also loves being swung upside down by his
                  > feet! He has been home since he was 2 1/2 mos. And
                  > he is as smart as a whip!! I mean, this kid is
                  > brilliant!! We love him tremendously, and do not
                  > regret fighting for his life. I have a sense of what
                  > you have gone through, but I can't imagine having 3
                  > others at the same time!! I am here to talk with you
                  > about anything- please feel free to write again. This
                  > group is very friendly and helpful. Godspeed.
                  > -Connie
                  > --- miracleshappenant01
                  > <miracleshappenant01@y...> wrote:
                  > > Hi everyone, my name is Tina Katz and I live in
                  > > Monroe, CT with my 4
                  > > sons and husband. My baby Anthony not a baby
                  > > anymore has Myotubular
                  > > Myopathy MTM1. He is 21/2 years old now and I am so
                  > > very proud of
                  > > him. At birth we had no idea that anything was
                  > > wrong until I
                  > > delivered and he wasn't breathing on his own. He
                  > > was trached and
                  > > given a G-tube at 3 months. Prior to that I was
                  > > told that Anthony
                  > > would have brain damage and it would be a unfair
                  > > life for him and my
                  > > other 3 boys if we kept him on life support. Well
                  > > with the support
                  > > of our family and God's love we knew what the right
                  > > thing to do was.
                  > > He knows about 30 signs, he is so active and catches
                  > > on so quickly to
                  > > act out all the nursery rymes. I guess in 2 years I
                  > > never knew these
                  > > groups existed. It would be great to be able to
                  > > talk to another mom
                  > > that truly can say I know what your going through.
                  > > Please let me
                  > > know if this is how I am supposed to communicate.
                  > > Thank You so much, Tina
                  > >
                  > >
                  > >
                  >
                  >
                  > __________________________________
                  > Do you Yahoo!?
                  > Exclusive Video Premiere - Britney Spears
                  > http://launch.yahoo.com/promos/britneyspears/
                • redscootee@webtv.net
                  Connie, My husband is very supportive. I am an only child. My mom passed away 16 years ago before we had a dx even of md. Looking back she also most likely was
                  Message 8 of 14 , Nov 3, 2003
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                    Connie,
                    My husband is very supportive. I am an only child. My mom passed away 16
                    years ago before we had a dx even of md. Looking back she also most
                    likely was a manifesting carrier. My dad finally went in for the blood
                    test and does not have md. Thus he does not talk about it at ALL with
                    me. He will either change the subject or not reply at all. I contributed
                    to an article in the Quest magazine about family reactions and then I
                    sent him the article. Never heard if he read it or not. Here is the page
                    if you care to read it.
                    <a href="http://www.wtv-zone.com/mdaww/family.html">Family Reactions to
                    MD</a>
                    Although our situations are different I can understand the
                    disappointment and heartache family can cause.
                    I have often wondered if I knew that we had x linked myotubular myopathy
                    would I have still had my children and I can't see how I would have done
                    things differently.
                    As you say about Benjamin is such a joy!
                    If you ever need to vent cuz family is giving you a hard time vent away!
                    (G) BTDT
                    I was wondering if you would mind if I put your story about Elijah and
                    Benjamin on our site? I was fortunate, to have had my daughter Jennifer
                    for 32 years before she succumbed to a complication of xmtm. When my son
                    found out he has xmtm he blamed me. I just told him I had no way of
                    knowing we had it and no matter what I love him very much. He is finally
                    accepting it and taking better care of himself. He is 28.
                    We also have an article on our site about mtm that is very inspirational
                    also. It talks about the doc thinking the one patient would not live
                    beyond his first year and he is still thriving at 12? not sure of his
                    age now. He will accompany her on lectures from time to time. Nice to
                    see when a doc can admit they were wrong. (S) Here is the article. <a
                    href="www.wtv-zone.com/mdaww/mtm.html">MTM</a>
                    In todays day and age kids are given a much better chance of living
                    longer and better quality of lives.
                    You and others on this list are like a breath of fresh air. Your
                    children are so precious and are lucky to have the parents they do that
                    show through lots of hard work and love anything is possible.
                    If anyone else would like to send their story or has a web site we would
                    love to include yours as well. We feel it is important to get the word
                    out on md. I get so tired of ppl saying oh you have ms. (GRR)
                    Have really enjoyed all the successes of your children. Tx for sharing.
                    Someone had asked where everyone was from. My husband and I live in
                    Roanoke, VA U.S.A., at the foot of the Blue Ridge Mountains. Beautiful
                    view out our windows.
                    take care pat
                  • connie guinn
                    Pat, Thanks for your response- you certainly do have a lot of experiences to share. I read the article- that is so accurate. How would I go about putting
                    Message 9 of 14 , Nov 4, 2003
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                      Pat, Thanks for your response- you certainly do have a
                      lot of experiences to share. I read the article- that
                      is so accurate. How would I go about putting
                      Elijah's and Benjamin's stories on your site? I know
                      the boy that you were mentioning (from your site).
                      His name is John Scoggin. We live 30 minutes from
                      them and we are in touch with them quite often. Take
                      care. Godspeed.
                      -Connie
                      --- redscootee@... wrote:
                      > Connie,
                      > My husband is very supportive. I am an only child.
                      > My mom passed away 16
                      > years ago before we had a dx even of md. Looking
                      > back she also most
                      > likely was a manifesting carrier. My dad finally
                      > went in for the blood
                      > test and does not have md. Thus he does not talk
                      > about it at ALL with
                      > me. He will either change the subject or not reply
                      > at all. I contributed
                      > to an article in the Quest magazine about family
                      > reactions and then I
                      > sent him the article. Never heard if he read it or
                      > not. Here is the page
                      > if you care to read it.
                      > <a
                      >
                      href="http://www.wtv-zone.com/mdaww/family.html">Family
                      > Reactions to
                      > MD</a>
                      > Although our situations are different I can
                      > understand the
                      > disappointment and heartache family can cause.
                      > I have often wondered if I knew that we had x linked
                      > myotubular myopathy
                      > would I have still had my children and I can't see
                      > how I would have done
                      > things differently.
                      > As you say about Benjamin is such a joy!
                      > If you ever need to vent cuz family is giving you a
                      > hard time vent away!
                      > (G) BTDT
                      > I was wondering if you would mind if I put your
                      > story about Elijah and
                      > Benjamin on our site? I was fortunate, to have had
                      > my daughter Jennifer
                      > for 32 years before she succumbed to a complication
                      > of xmtm. When my son
                      > found out he has xmtm he blamed me. I just told him
                      > I had no way of
                      > knowing we had it and no matter what I love him very
                      > much. He is finally
                      > accepting it and taking better care of himself. He
                      > is 28.
                      > We also have an article on our site about mtm that
                      > is very inspirational
                      > also. It talks about the doc thinking the one
                      > patient would not live
                      > beyond his first year and he is still thriving at
                      > 12? not sure of his
                      > age now. He will accompany her on lectures from time
                      > to time. Nice to
                      > see when a doc can admit they were wrong. (S) Here
                      > is the article. <a
                      > href="www.wtv-zone.com/mdaww/mtm.html">MTM</a>
                      > In todays day and age kids are given a much better
                      > chance of living
                      > longer and better quality of lives.
                      > You and others on this list are like a breath of
                      > fresh air. Your
                      > children are so precious and are lucky to have the
                      > parents they do that
                      > show through lots of hard work and love anything is
                      > possible.
                      > If anyone else would like to send their story or has
                      > a web site we would
                      > love to include yours as well. We feel it is
                      > important to get the word
                      > out on md. I get so tired of ppl saying oh you have
                      > ms. (GRR)
                      > Have really enjoyed all the successes of your
                      > children. Tx for sharing.
                      > Someone had asked where everyone was from. My
                      > husband and I live in
                      > Roanoke, VA U.S.A., at the foot of the Blue Ridge
                      > Mountains. Beautiful
                      > view out our windows.
                      > take care pat
                      >
                      >


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                    • redscootee@webtv.net
                      Connie, Thanks so much for allowing us to share your story. I will put it on our site and let you know when it is on. Does Benjamin have a favorite color or
                      Message 10 of 14 , Nov 5, 2003
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                        Connie, Thanks so much for allowing us to share your story. I will put
                        it on our site and let you know when it is on. Does Benjamin have a
                        favorite color or cartoon character or something? If he does I will try
                        and look for a background along those lines for the story.
                        Like Toni mentioned in her email ppl seems to enjoy reading the personal
                        stories. I think it gives them a much better picture of what living with
                        a nmd is like.
                        take care pat
                      • connie guinn
                        Pat, benjamin s favorite, by far, is Elmo!! Godspeed. -Connie ... __________________________________ Do you Yahoo!? Protect your identity with Yahoo! Mail
                        Message 11 of 14 , Nov 6, 2003
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                          Pat,
                          benjamin's favorite, by far, is Elmo!! Godspeed.
                          -Connie
                          --- redscootee@... wrote:
                          > Connie, Thanks so much for allowing us to share your
                          > story. I will put
                          > it on our site and let you know when it is on. Does
                          > Benjamin have a
                          > favorite color or cartoon character or something? If
                          > he does I will try
                          > and look for a background along those lines for the
                          > story.
                          > Like Toni mentioned in her email ppl seems to enjoy
                          > reading the personal
                          > stories. I think it gives them a much better picture
                          > of what living with
                          > a nmd is like.
                          > take care pat
                          >
                          >


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