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A Christmas Miracle

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  • alison.frase
    Hello Everyone, I will try to make this last few months journey as short as possible; it will be difficult to include all the details. As some of you may know
    Message 1 of 3 , Jan 1, 2009
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      Hello Everyone,

      I will try to make this last few months journey as short as possible;
      it will be difficult to include all the details. As some of you may
      know a few months back there was a female dog (a Labrador Retriever)
      that was found that carries the same gene as Joshua and myself. She
      does not show the signs and symptoms. She is absolutely beautiful!

      This dog was found by a veterinarian in Saskatoon, Canada, Dr.
      Elizabeth Snead. The confirmation came when the LR gave birth to two
      affected pups out of ten. The muscle tissue from the pups was then
      sent to the USD to a Dr. Diane Shelton who confirmed the muscle
      disorder. Before we could get a chance to speak to the owner of that
      dog (Trixie), she was spayed and our promise for research with a
      large animal model came to a screeching halt! After a lengthy
      conversation with Dr. Snead, I shared with her where we were at with
      research and how a large animal model will get us to clinical trials
      for these children that struggle with Joshua's neuromuscular
      disease. She then spent weeks trying to locate a female sibling of
      Trixie, the dog that was a carrier. She located a family that owned
      the sister of Trixie: the dog's name is Nibs. Dr. Snead learned that
      Nibs also gave birth in August and two out ten female pups were
      affected. This was a definite confirmation that Nibs was a carrier of
      the same gene.

      Dr. Snead then gave me the number of the owners of Nibs, Vic & Karen
      Wagman located in Leader, Saskatoon in the Saskatchewan providence of
      Canada. I then called Vic, not knowing to what extent of
      involvement, if any, he would consider concerning our research. I
      thanked him for calling and explained where we are with research and
      what we needed to do get to clinical trials. I then shared with him
      the time clock Joshua was facing and about the nine children we had
      lost just this year and before I could finish Vic said, " I want to
      give you this dog, I want to be able to help your son ". I was so
      over whelmed great joy as am right now. The anticipation with what
      was taking place before my very eyes was beyond words. I was so
      overwhelmed that someone I just had met was willing to give me their
      dog to further our cause.

      Paul and I agreed that night that I needed to get on a plane
      immediately as we felt the urgency to acquire the dog as quickly as
      possible. Vic and Karen adjusted their schedule and drove six hours
      round trip to meet me in Saskatoon with Nibs. It was a very
      heartrending meeting and words are not enough to express the
      gratitude for their contribution for our Joshua and the Joshua's of
      the world. It was an unusual and odd bonding that took place between
      me and Nibs; by morning, she trusted me.

      Nibs and I got on a flight the next afternoon to try to beat the drop
      in temperature, for Nibs' travel safety. Vic and Karen were an
      integral part in this arduous process – scrambling to find a dog
      carrier to purchase to transport Nibs (the airlines had lost my
      luggage). They then took me to the airport to assemble the crate to
      make it through customs in time. It was a very touching goodbye for
      me. These folks that I had only met a few weeks earlier via the
      phone had given me their dog of four years.

      Since the airlines had lost my luggage along with the dog carrier,
      Nibs and I took one flight to Minnesota to break up the trip for the
      two of us and borrow some clothes. We stayed with my girl friend Lisa
      Alipate and Nibs had a blast playing with her six children. The
      following day Nibs and I went standby on the second flight direct to
      NC, after almost being separated by the airlines earlier that
      morning. My guard was constantly up; looking out for Nibs' safety and
      her care. Upon arriving I handed nibs over to one of my
      researcher's, Dr. Martin Childers and his wife Shari; it was very
      emotional for me. I was torn between knowing what Nibs needed to do
      for our son at Wake Forest in NC, but I also knew that she belonged
      with me. While I was still in the airport waiting for the last leg of
      my flight, I called one of my researchers at Wake and shared with him
      that after Nibs gave them one to two litters that I would like for
      her to come to live with our family.

      My travel odyssey consisted of four airlines and 10 ticket changes
      and three days of travel with no luggage; thank God most ticket
      changes took place while I was on my way to Canada with out Nibs
      being present.

      Words can not express our heartfelt gratitude to all that have been
      involved with the locating and donation of this beautiful animal!

      Enclosed you will find the soon to be family member of the Frase
      house hold who will play an integral role in finding a cure for our
      children affected with neuromuscular diseases.

      Wishing you all a happy, healthy and prosperous year in 2009 - don't
      give up Hope!



      Alison, Paul, Joshua and Isabella
    • Wendy
      What a lovely uplifting mail! Amazing that you were able to locate Nibs and the story of how you acquired her. What an incredible story - we are very excited
      Message 2 of 3 , Jan 2, 2009
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        What a lovely uplifting mail!  Amazing that you were able to locate Nibs and the story of how you acquired her.  What an incredible story - we are very excited for the potential help that Nibs can bring to finding a cure for MTM/CNM!

        With our sincere thanks and best wishes,

        Wendy and family xx

         

        -----Original Message-----
        From:
        Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of alison.frase
        Sent:
        02 January 2009 01:09
        To:
        Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] A Christmas Miracle

         

        Hello Everyone,

        I will try to make this last few months journey as short as possible;
        it will be difficult to include all the details. As some of you may
        know a few months back there was a female dog (a Labrador Retriever)
        that was found that carries the same gene as Joshua and myself. She
        does not show the signs and symptoms. She is absolutely beautiful!

        This dog was found by a veterinarian in Saskatoon, Canada, Dr.
        Elizabeth Snead. The confirmation came when the LR gave birth to two
        affected pups out of ten. The muscle tissue from the pups was then
        sent to the USD to a Dr. Diane Shelton who confirmed the muscle
        disorder. Before we could get a chance to speak to the owner of that
        dog (Trixie), she was spayed and our promise for research with a
        large animal model came to a screeching halt! After a lengthy
        conversation with Dr. Snead, I shared with her where we were at with
        research and how a large animal model will get us to clinical trials
        for these children that struggle with Joshua's neuromuscular
        disease. She then spent weeks trying to locate a female sibling of
        Trixie, the dog that was a carrier. She located a family that owned
        the sister of Trixie: the dog's name is Nibs. Dr. Snead learned that
        Nibs also gave birth in August and two out ten female pups were
        affected. This was a definite confirmation that Nibs was a carrier of
        the same gene.

        Dr. Snead then gave me the number of the owners of Nibs, Vic & Karen
        Wagman located in Leader, Saskatoon in the Saskatchewan providence of
        Canada. I then called Vic, not knowing to what extent of
        involvement, if any, he would consider concerning our research. I
        thanked him for calling and explained where we are with research and
        what we needed to do get to clinical trials. I then shared with him
        the time clock Joshua was facing and about the nine children we had
        lost just this year and before I could finish Vic said, " I want to
        give you this dog, I want to be able to help your son ". I was so
        over whelmed great joy as am right now. The anticipation with what
        was taking place before my very eyes was beyond words. I was so
        overwhelmed that someone I just had met was willing to give me their
        dog to further our cause.

        Paul and I agreed that night that I needed to get on a plane
        immediately as we felt the urgency to acquire the dog as quickly as
        possible. Vic and Karen adjusted their schedule and drove six hours
        round trip to meet me in Saskatoon with Nibs. It was a very
        heartrending meeting and words are not enough to express the
        gratitude for their contribution for our Joshua and the Joshua's of
        the world. It was an unusual and odd bonding that took place between
        me and Nibs; by morning, she trusted me.

        Nibs and I got on a flight the next afternoon to try to beat the drop
        in temperature, for Nibs' travel safety. Vic and Karen were an
        integral part in this arduous process – scrambling to find a dog
        carrier to purchase to transport Nibs (the airlines had lost my
        luggage). They then took me to the airport to assemble the crate to
        make it through customs in time. It was a very touching goodbye for
        me. These folks that I had only met a few weeks earlier via the
        phone had given me their dog of four years.

        Since the airlines had lost my luggage along with the dog carrier,
        Nibs and I took one flight to Minnesota to break up the trip for the
        two of us and borrow some clothes. We stayed with my girl friend Lisa
        Alipate and Nibs had a blast playing with her six children. The
        following day Nibs and I went standby on the second flight direct to
        NC, after almost being separated by the airlines earlier that
        morning. My guard was constantly up; looking out for Nibs' safety and
        her care. Upon arriving I handed nibs over to one of my
        researcher's, Dr. Martin Childers and his wife Shari; it was very
        emotional for me. I was torn between knowing what Nibs needed to do
        for our son at Wake Forest in NC, but I also knew that she belonged
        with me. While I was still in the airport waiting for the last leg of
        my flight, I called one of my researchers at Wake and shared with him
        that after Nibs gave them one to two litters that I would like for
        her to come to live with our family.

        My travel odyssey consisted of four airlines and 10 ticket changes
        and three days of travel with no luggage; thank God most ticket
        changes took place while I was on my way to Canada with out Nibs
        being present.

        Words can not express our heartfelt gratitude to all that have been
        involved with the locating and donation of this beautiful animal!

        Enclosed you will find the soon to be family member of the Frase
        house hold who will play an integral role in finding a cure for our
        children affected with neuromuscular diseases.

        Wishing you all a happy, healthy and prosperous year in 2009 - don't
        give up Hope!

        Alison, Paul, Joshua and Isabella

      • WANDA SANTORY
        Wow that is so amazing. Best of luck with the research. Keep us posted. I hope it works out. My prayers to it all. Wanda ________________________________ From:
        Message 3 of 3 , Jan 2, 2009
        • 0 Attachment
          Wow that is so amazing. Best of luck with the research. Keep us posted. I hope it works out. My prayers to it all.
           
          Wanda


          From: alison.frase <alison@...>
          To: Myotubular_Myopathy@yahoogroups.com
          Sent: Thursday, January 1, 2009 8:08:35 PM
          Subject: [Myotubular_Myopathy] A Christmas Miracle

          Hello Everyone,

          I will try to make this last few months journey as short as possible;
          it will be difficult to include all the details. As some of you may
          know a few months back there was a female dog (a Labrador Retriever)
          that was found that carries the same gene as Joshua and myself. She
          does not show the signs and symptoms. She is absolutely beautiful!

          This dog was found by a veterinarian in Saskatoon, Canada, Dr.
          Elizabeth Snead. The confirmation came when the LR gave birth to two
          affected pups out of ten. The muscle tissue from the pups was then
          sent to the USD to a Dr. Diane Shelton who confirmed the muscle
          disorder. Before we could get a chance to speak to the owner of that
          dog (Trixie), she was spayed and our promise for research with a
          large animal model came to a screeching halt! After a lengthy
          conversation with Dr. Snead, I shared with her where we were at with
          research and how a large animal model will get us to clinical trials
          for these children that struggle with Joshua's neuromuscular
          disease. She then spent weeks trying to locate a female sibling of
          Trixie, the dog that was a carrier. She located a family that owned
          the sister of Trixie: the dog's name is Nibs. Dr. Snead learned that
          Nibs also gave birth in August and two out ten female pups were
          affected. This was a definite confirmation that Nibs was a carrier of
          the same gene.

          Dr. Snead then gave me the number of the owners of Nibs, Vic & Karen
          Wagman located in Leader, Saskatoon in the Saskatchewan providence of
          Canada. I then called Vic, not knowing to what extent of
          involvement, if any, he would consider concerning our research. I
          thanked him for calling and explained where we are with research and
          what we needed to do get to clinical trials. I then shared with him
          the time clock Joshua was facing and about the nine children we had
          lost just this year and before I could finish Vic said, " I want to
          give you this dog, I want to be able to help your son ". I was so
          over whelmed great joy as am right now. The anticipation with what
          was taking place before my very eyes was beyond words. I was so
          overwhelmed that someone I just had met was willing to give me their
          dog to further our cause.

          Paul and I agreed that night that I needed to get on a plane
          immediately as we felt the urgency to acquire the dog as quickly as
          possible. Vic and Karen adjusted their schedule and drove six hours
          round trip to meet me in Saskatoon with Nibs. It was a very
          heartrending meeting and words are not enough to express the
          gratitude for their contribution for our Joshua and the Joshua's of
          the world. It was an unusual and odd bonding that took place between
          me and Nibs; by morning, she trusted me.

          Nibs and I got on a flight the next afternoon to try to beat the drop
          in temperature, for Nibs' travel safety. Vic and Karen were an
          integral part in this arduous process – scrambling to find a dog
          carrier to purchase to transport Nibs (the airlines had lost my
          luggage). They then took me to the airport to assemble the crate to
          make it through customs in time. It was a very touching goodbye for
          me. These folks that I had only met a few weeks earlier via the
          phone had given me their dog of four years.

          Since the airlines had lost my luggage along with the dog carrier,
          Nibs and I took one flight to Minnesota to break up the trip for the
          two of us and borrow some clothes. We stayed with my girl friend Lisa
          Alipate and Nibs had a blast playing with her six children. The
          following day Nibs and I went standby on the second flight direct to
          NC, after almost being separated by the airlines earlier that
          morning. My guard was constantly up; looking out for Nibs' safety and
          her care. Upon arriving I handed nibs over to one of my
          researcher's, Dr. Martin Childers and his wife Shari; it was very
          emotional for me. I was torn between knowing what Nibs needed to do
          for our son at Wake Forest in NC, but I also knew that she belonged
          with me. While I was still in the airport waiting for the last leg of
          my flight, I called one of my researchers at Wake and shared with him
          that after Nibs gave them one to two litters that I would like for
          her to come to live with our family.

          My travel odyssey consisted of four airlines and 10 ticket changes
          and three days of travel with no luggage; thank God most ticket
          changes took place while I was on my way to Canada with out Nibs
          being present.

          Words can not express our heartfelt gratitude to all that have been
          involved with the locating and donation of this beautiful animal!

          Enclosed you will find the soon to be family member of the Frase
          house hold who will play an integral role in finding a cure for our
          children affected with neuromuscular diseases.

          Wishing you all a happy, healthy and prosperous year in 2009 - don't
          give up Hope!

          Alison, Paul, Joshua and Isabella


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