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MTM in the News, UK

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  • patsarah2006
    Here s a newspaper article on a child in the UK who passed away from MTM. http://www.littlehamptongazette.co.uk:80/worthing-news? articleid=3035046 Published
    Message 1 of 8 , Jul 17, 2007
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      Here's a newspaper article on a child in the UK who passed away from
      MTM.

      http://www.littlehamptongazette.co.uk:80/worthing-news?
      articleid=3035046

      Published Date: 17 July 2007
      Location: Worthing
      Lancing family's wish for Jack


      THE parents of a baby who died on his first birthday have launched a
      campaign to raise half a million pounds for the hospice where he was
      cared for.
      Jack Blunsdon suffered from a rare condition called myotubular
      myopathy, which causes muscle weakness throughout the body.

      He died at Chestnut Tree House children's hospice, at Poling, near
      Arundel, on January 11.

      His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy, have
      launched the Jack's Birthday Wish campaign in a bid to raise £500,000
      for the hospice by January 11, 2007, which would have been their
      son's second birthday.

      Karen, 33, paid tribute to staff at Chestnut Tree House.

      She said: "They saved our sanity. We had the respite care and we had
      the support. We have had bereavement counselling.

      "It is not them just looking after a disabled child, it is about
      looking after the whole family. If they offer your child a place,
      there is a place for you as well."

      Karen added support continued after Jack's death and helped fill the
      void left by his loss, which she described as huge.

      "You don't just feel the loss of having someone to look after.
      Nurses, physiotherapists and doctors have gone away. You don't need
      them anymore.

      "At Chestnut Tree House, they are always there.

      "They are used to dealing with people who have lost children. I can
      still go up to Chestnut Tree House now and have a cup of tea."

      The hospice currently runs at just half its full capacity. Of the 10
      rooms, five are empty and unused.

      The £500,000 Karen and Dave hope to raise through the Jack's Birthday
      Wish campaign would cover the cost of opening another room – and
      keeping it open.

      Karen said achieving their goal would be a fitting tribute to their
      son.
      "He was very much a big character," she said.

      "For such a little person, who was here for such a short time, he
      made a massive impact. If we could open another bed, it would mean
      Jack's life wasn't in vain."

      Anyone who would like to support the campaign can complete and return
      the form published in wht July 12 edition of the Worthing Herald, or
      call Chestnut Tree House, on 01903 871820, or log on to www.chestnut-
      tree house.org.uk
    • SIMONE
      Hi Sarah I too read this article and think it is great that Karen is raising money for a respite centre for children and their families. However my thinking is
      Message 2 of 8 , Jul 17, 2007
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        Hi Sarah
        I too read this article and think it is great that Karen is raising
        money for a respite centre for children and their families. However
        my thinking is wouldn't it be better to put the money towards
        research and finding a cure for MTM so that these children don't
        require these centres and can live full lives.
        But again I admire her strength after losing her beautiful boy to
        commit to such a huge campaign.
        simone
        --- In Myotubular_Myopathy@yahoogroups.com, "patsarah2006"
        <patsarah@...> wrote:
        >
        > Here's a newspaper article on a child in the UK who passed away
        from
        > MTM.
        >
        > http://www.littlehamptongazette.co.uk:80/worthing-news?
        > articleid=3035046
        >
        > Published Date: 17 July 2007
        > Location: Worthing
        > Lancing family's wish for Jack
        >
        >
        > THE parents of a baby who died on his first birthday have launched
        a
        > campaign to raise half a million pounds for the hospice where he
        was
        > cared for.
        > Jack Blunsdon suffered from a rare condition called myotubular
        > myopathy, which causes muscle weakness throughout the body.
        >
        > He died at Chestnut Tree House children's hospice, at Poling, near
        > Arundel, on January 11.
        >
        > His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy,
        have
        > launched the Jack's Birthday Wish campaign in a bid to raise
        £500,000
        > for the hospice by January 11, 2007, which would have been their
        > son's second birthday.
        >
        > Karen, 33, paid tribute to staff at Chestnut Tree House.
        >
        > She said: "They saved our sanity. We had the respite care and we
        had
        > the support. We have had bereavement counselling.
        >
        > "It is not them just looking after a disabled child, it is about
        > looking after the whole family. If they offer your child a place,
        > there is a place for you as well."
        >
        > Karen added support continued after Jack's death and helped fill
        the
        > void left by his loss, which she described as huge.
        >
        > "You don't just feel the loss of having someone to look after.
        > Nurses, physiotherapists and doctors have gone away. You don't
        need
        > them anymore.
        >
        > "At Chestnut Tree House, they are always there.
        >
        > "They are used to dealing with people who have lost children. I
        can
        > still go up to Chestnut Tree House now and have a cup of tea."
        >
        > The hospice currently runs at just half its full capacity. Of the
        10
        > rooms, five are empty and unused.
        >
        > The £500,000 Karen and Dave hope to raise through the Jack's
        Birthday
        > Wish campaign would cover the cost of opening another room – and
        > keeping it open.
        >
        > Karen said achieving their goal would be a fitting tribute to
        their
        > son.
        > "He was very much a big character," she said.
        >
        > "For such a little person, who was here for such a short time, he
        > made a massive impact. If we could open another bed, it would mean
        > Jack's life wasn't in vain."
        >
        > Anyone who would like to support the campaign can complete and
        return
        > the form published in wht July 12 edition of the Worthing Herald,
        or
        > call Chestnut Tree House, on 01903 871820, or log on to
        www.chestnut-
        > tree house.org.uk
        >
      • KAREN VARDY
        I do feel it very unfair of you to pass comment on our situation. You do not know the whole story. The press coverage for Chestnut Tree House is local to our
        Message 3 of 8 , Jul 18, 2007
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          I do feel it very unfair of you to pass comment on our situation. You do not know the whole story.
           The press coverage for Chestnut Tree House is local to our area and is trying to raise awareness of both it's lack of funding and its existance. The funding will enable not just children with MTM, but all children with a terminal or life shortening illness to have access to their facilities. 24 hour nursing care which seems to be widely available in the USA, is not so available over here in the UK, so without hospices like these hundreds of families like us would have no break at all in their 24/7 routines. While doing this fund raising I am also helping Wendy and Anne out with some Myotubular Trust activities and have just returned from a visit to Romania on their behalf.
          I know this is a website to air our views but please think. Some of your comments are hurtful and I do not see why I should have to justify my actions.
          I'm actually trying to do some good believe it or not!!!!!

          SIMONE <zacantsim70@...> wrote:
          Hi Sarah
          I too read this article and think it is great that Karen is raising
          money for a respite centre for children and their families. However
          my thinking is wouldn't it be better to put the money towards
          research and finding a cure for MTM so that these children don't
          require these centres and can live full lives.
          But again I admire her strength after losing her beautiful boy to
          commit to such a huge campaign.
          simone
          --- In Myotubular_Myopathy @yahoogroups. com, "patsarah2006"
          <patsarah@.. .> wrote:
          >
          > Here's a newspaper article on a child in the UK who passed away
          from
          > MTM.
          >
          > http://www.littleha mptongazette. co.uk:80/ worthing- news?
          > articleid=3035046
          >
          > Published Date: 17 July 2007
          > Location: Worthing
          > Lancing family's wish for Jack
          >
          >
          > THE parents of a baby who died on his first birthday have launched
          a
          > campaign to raise half a million pounds for the hospice where he
          was
          > cared for.
          > Jack Blunsdon suffered from a rare condition called myotubular
          > myopathy, which causes muscle weakness throughout the body.
          >
          > He died at Chestnut Tree House children's hospice, at Poling, near
          > Arundel, on January 11.
          >
          > His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy,
          have
          > launched the Jack's Birthday Wish campaign in a bid to raise
          £500,000
          > for the hospice by January 11, 2007, which would have been their
          > son's second birthday.
          >
          > Karen, 33, paid tribute to staff at Chestnut Tree House.
          >
          > She said: "They saved our sanity. We had the respite care and we
          had
          > the support. We have had bereavement counselling.
          >
          > "It is not them just looking after a disabled child, it is about
          > looking after the whole family. If they offer your child a place,
          > there is a place for you as well."
          >
          > Karen added support continued after Jack's death and helped fill
          the
          > void left by his loss, which she described as huge.
          >
          > "You don't just feel the loss of having someone to look after.
          > Nurses, physiotherapists and doctors have gone away. You don't
          need
          > them anymore.
          >
          > "At Chestnut Tree House, they are always there.
          >
          > "They are used to dealing with people who have lost children. I
          can
          > still go up to Chestnut Tree House now and have a cup of tea."
          >
          > The hospice currently runs at just half its full capacity. Of the
          10
          > rooms, five are empty and unused.
          >
          > The £500,000 Karen and Dave hope to raise through the Jack's
          Birthday
          > Wish campaign would cover the cost of opening another room – and
          > keeping it open.
          >
          > Karen said achieving their goal would be a fitting tribute to
          their
          > son.
          > "He was very much a big character," she said.
          >
          > "For such a little person, who was here for such a short time, he
          > made a massive impact. If we could open another bed, it would mean
          > Jack's life wasn't in vain."
          >
          > Anyone who would like to support the campaign can complete and
          return
          > the form published in wht July 12 edition of the Worthing Herald,
          or
          > call Chestnut Tree House, on 01903 871820, or log on to
          www.chestnut-
          > tree house.org.uk
          >



          Yahoo! Mail is the world's favourite email. Don't settle for less, sign up for your free account today.

        • Anne Lennox
          Wendy and I too would like also to say how marvellously supportive Karen has been raising funds for finding a cure for myotubular myopathy. She recently gave
          Message 4 of 8 , Jul 18, 2007
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            Wendy and I too would like also to say how marvellously supportive Karen has been raising funds for finding a cure for myotubular myopathy.  She recently gave up a whole weekend of her life to go to Romania and inspire literally 100s of children to run their little legs off in aid of our children.  We do encourage you to go on the cumpana gallery of photos on the fundraising page of the Myotubular Trust site - and just see what this woman has done for us allhttp://www.myotubulartrust.com/page12cumpana.htm 
            When you meet a woman as capable and brave as Karen, there's always more than one thing they're doing for other people's good!
             
            With love and appreciation
            Anne and Wendy
             
             
             
             
             


            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of KAREN VARDY
            Sent: 18 July 2007 21:24
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: Re: [Myotubular_Myopathy] Re: MTM in the News, UK

            I do feel it very unfair of you to pass comment on our situation. You do not know the whole story.
             The press coverage for Chestnut Tree House is local to our area and is trying to raise awareness of both it's lack of funding and its existance. The funding will enable not just children with MTM, but all children with a terminal or life shortening illness to have access to their facilities. 24 hour nursing care which seems to be widely available in the USA, is not so available over here in the UK, so without hospices like these hundreds of families like us would have no break at all in their 24/7 routines. While doing this fund raising I am also helping Wendy and Anne out with some Myotubular Trust activities and have just returned from a visit to Romania on their behalf.
            I know this is a website to air our views but please think. Some of your comments are hurtful and I do not see why I should have to justify my actions.
            I'm actually trying to do some good believe it or not!!!!!

            SIMONE <zacantsim70@ yahoo.com> wrote:
            Hi Sarah
            I too read this article and think it is great that Karen is raising
            money for a respite centre for children and their families. However
            my thinking is wouldn't it be better to put the money towards
            research and finding a cure for MTM so that these children don't
            require these centres and can live full lives.
            But again I admire her strength after losing her beautiful boy to
            commit to such a huge campaign.
            simone
            --- In Myotubular_Myopathy @yahoogroups. com, "patsarah2006"
            <patsarah@.. .> wrote:
            >
            > Here's a newspaper article on a child in the UK who passed away
            from
            > MTM.
            >
            > http://www.littleha mptongazette. co.uk:80/ worthing- news?
            > articleid=3035046
            >
            > Published Date: 17 July 2007
            > Location: Worthing
            > Lancing family's wish for Jack
            >
            >
            > THE parents of a baby who died on his first birthday have launched
            a
            > campaign to raise half a million pounds for the hospice where he
            was
            > cared for.
            > Jack Blunsdon suffered from a rare condition called myotubular
            > myopathy, which causes muscle weakness throughout the body.
            >
            > He died at Chestnut Tree House children's hospice, at Poling, near
            > Arundel, on January 11.
            >
            > His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy,
            have
            > launched the Jack's Birthday Wish campaign in a bid to raise
            £500,000
            > for the hospice by January 11, 2007, which would have been their
            > son's second birthday.
            >
            > Karen, 33, paid tribute to staff at Chestnut Tree House.
            >
            > She said: "They saved our sanity. We had the respite care and we
            had
            > the support. We have had bereavement counselling.
            >
            > "It is not them just looking after a disabled child, it is about
            > looking after the whole family. If they offer your child a place,
            > there is a place for you as well."
            >
            > Karen added support continued after Jack's death and helped fill
            the
            > void left by his loss, which she described as huge.
            >
            > "You don't just feel the loss of having someone to look after.
            > Nurses, physiotherapists and doctors have gone away. You don't
            need
            > them anymore.
            >
            > "At Chestnut Tree House, they are always there.
            >
            > "They are used to dealing with people who have lost children. I
            can
            > still go up to Chestnut Tree House now and have a cup of tea."
            >
            > The hospice currently runs at just half its full capacity. Of the
            10
            > rooms, five are empty and unused.
            >
            > The £500,000 Karen and Dave hope to raise through the Jack's
            Birthday
            > Wish campaign would cover the cost of opening another room – and
            > keeping it open.
            >
            > Karen said achieving their goal would be a fitting tribute to
            their
            > son.
            > "He was very much a big character," she said.
            >
            > "For such a little person, who was here for such a short time, he
            > made a massive impact. If we could open another bed, it would mean
            > Jack's life wasn't in vain."
            >
            > Anyone who would like to support the campaign can complete and
            return
            > the form published in wht July 12 edition of the Worthing Herald,
            or
            > call Chestnut Tree House, on 01903 871820, or log on to
            www.chestnut-
            > tree house.org.uk
            >



            Yahoo! Mail is the world's favourite email. Don't settle for less, sign up for your free account today.

          • DARLENE MILLER
            Hi Karen, I, myself think what you are doing and have done is wonderful. Not only are you helping to fund research, but helping resources that have helped you
            Message 5 of 8 , Jul 18, 2007
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              Hi Karen,
               
              I, myself think what you are doing and have done is wonderful.
              Not only are you helping to fund research, but helping resources
              that have helped you through the good and bad times. 
               
              Keep doing what you are doing, it's an inspiration to us all.
               
              Darlene
               
               
              ----- Original Message -----
              Sent: Wednesday, July 18, 2007 4:24 PM
              Subject: Re: [Myotubular_Myopathy] Re: MTM in the News, UK

              I do feel it very unfair of you to pass comment on our situation. You do not know the whole story.
               The press coverage for Chestnut Tree House is local to our area and is trying to raise awareness of both it's lack of funding and its existance. The funding will enable not just children with MTM, but all children with a terminal or life shortening illness to have access to their facilities. 24 hour nursing care which seems to be widely available in the USA, is not so available over here in the UK, so without hospices like these hundreds of families like us would have no break at all in their 24/7 routines. While doing this fund raising I am also helping Wendy and Anne out with some Myotubular Trust activities and have just returned from a visit to Romania on their behalf.
              I know this is a website to air our views but please think. Some of your comments are hurtful and I do not see why I should have to justify my actions.
              I'm actually trying to do some good believe it or not!!!!!

              SIMONE <zacantsim70@ yahoo.com> wrote:
              Hi Sarah
              I too read this article and think it is great that Karen is raising
              money for a respite centre for children and their families. However
              my thinking is wouldn't it be better to put the money towards
              research and finding a cure for MTM so that these children don't
              require these centres and can live full lives.
              But again I admire her strength after losing her beautiful boy to
              commit to such a huge campaign.
              simone
              --- In Myotubular_Myopathy @yahoogroups. com, "patsarah2006"
              <patsarah@.. .> wrote:
              >
              > Here's a newspaper article on a child in the UK who passed away
              from
              > MTM.
              >
              > http://www.littleha mptongazette. co.uk:80/ worthing- news?
              > articleid=3035046
              >
              > Published Date: 17 July 2007
              > Location: Worthing
              > Lancing family's wish for Jack
              >
              >
              > THE parents of a baby who died on his first birthday have launched
              a
              > campaign to raise half a million pounds for the hospice where he
              was
              > cared for.
              > Jack Blunsdon suffered from a rare condition called myotubular
              > myopathy, which causes muscle weakness throughout the body.
              >
              > He died at Chestnut Tree House children's hospice, at Poling, near
              > Arundel, on January 11.
              >
              > His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy,
              have
              > launched the Jack's Birthday Wish campaign in a bid to raise
              £500,000
              > for the hospice by January 11, 2007, which would have been their
              > son's second birthday.
              >
              > Karen, 33, paid tribute to staff at Chestnut Tree House.
              >
              > She said: "They saved our sanity. We had the respite care and we
              had
              > the support. We have had bereavement counselling.
              >
              > "It is not them just looking after a disabled child, it is about
              > looking after the whole family. If they offer your child a place,
              > there is a place for you as well."
              >
              > Karen added support continued after Jack's death and helped fill
              the
              > void left by his loss, which she described as huge.
              >
              > "You don't just feel the loss of having someone to look after.
              > Nurses, physiotherapists and doctors have gone away. You don't
              need
              > them anymore.
              >
              > "At Chestnut Tree House, they are always there.
              >
              > "They are used to dealing with people who have lost children. I
              can
              > still go up to Chestnut Tree House now and have a cup of tea."
              >
              > The hospice currently runs at just half its full capacity. Of the
              10
              > rooms, five are empty and unused.
              >
              > The £500,000 Karen and Dave hope to raise through the Jack's
              Birthday
              > Wish campaign would cover the cost of opening another room - and
              > keeping it open.
              >
              > Karen said achieving their goal would be a fitting tribute to
              their
              > son.
              > "He was very much a big character," she said.
              >
              > "For such a little person, who was here for such a short time, he
              > made a massive impact. If we could open another bed, it would mean
              > Jack's life wasn't in vain."
              >
              > Anyone who would like to support the campaign can complete and
              return
              > the form published in wht July 12 edition of the Worthing Herald,
              or
              > call Chestnut Tree House, on 01903 871820, or log on to
              www.chestnut-
              > tree house.org.uk
              >



              Yahoo! Mail is the world's favourite email. Don't settle for less, sign up for your free account today.

            • SIMONE
              Hi Karen I apologize for my comments I didn t mean to upset you. I say once again I admire your strength and commitment to the cause. I too have lost a child
              Message 6 of 8 , Jul 18, 2007
              • 0 Attachment
                Hi Karen
                I apologize for my comments I didn't mean to upset you. I say once
                again I admire your strength and commitment to the cause.
                I too have lost a child and am caring for my other son who also has
                MTM and is very sick at the moment.Hence, I am desperate to hear of
                a break thru in research. We are trying to organise some funds over
                here in Australia to help Myotubular trust.
                We do not have any respite centres for young children in our city so
                I haven't experienced that sort of support. But it sounds like a
                fabulous centre and well deserving of support.
                I am very sorry Karen to cause you upset.
                SImone

                --- In Myotubular_Myopathy@yahoogroups.com, KAREN VARDY
                <karenvardy@...> wrote:
                >
                > I do feel it very unfair of you to pass comment on our situation.
                You do not know the whole story.
                > The press coverage for Chestnut Tree House is local to our area
                and is trying to raise awareness of both it's lack of funding and
                its existance. The funding will enable not just children with MTM,
                but all children with a terminal or life shortening illness to have
                access to their facilities. 24 hour nursing care which seems to be
                widely available in the USA, is not so available over here in the
                UK, so without hospices like these hundreds of families like us
                would have no break at all in their 24/7 routines. While doing this
                fund raising I am also helping Wendy and Anne out with some
                Myotubular Trust activities and have just returned from a visit to
                Romania on their behalf.
                > I know this is a website to air our views but please think. Some
                of your comments are hurtful and I do not see why I should have to
                justify my actions.
                > I'm actually trying to do some good believe it or not!!!!!
                >
                > SIMONE <zacantsim70@...> wrote:
                > Hi Sarah
                > I too read this article and think it is great that Karen is
                raising
                > money for a respite centre for children and their families.
                However
                > my thinking is wouldn't it be better to put the money towards
                > research and finding a cure for MTM so that these children don't
                > require these centres and can live full lives.
                > But again I admire her strength after losing her beautiful boy to
                > commit to such a huge campaign.
                > simone
                > --- In Myotubular_Myopathy@yahoogroups.com, "patsarah2006"
                > <patsarah@> wrote:
                > >
                > > Here's a newspaper article on a child in the UK who passed away
                > from
                > > MTM.
                > >
                > > http://www.littlehamptongazette.co.uk:80/worthing-news?
                > > articleid=3035046
                > >
                > > Published Date: 17 July 2007
                > > Location: Worthing
                > > Lancing family's wish for Jack
                > >
                > >
                > > THE parents of a baby who died on his first birthday have
                launched
                > a
                > > campaign to raise half a million pounds for the hospice where he
                > was
                > > cared for.
                > > Jack Blunsdon suffered from a rare condition called myotubular
                > > myopathy, which causes muscle weakness throughout the body.
                > >
                > > He died at Chestnut Tree House children's hospice, at Poling,
                near
                > > Arundel, on January 11.
                > >
                > > His parents, Lancing couple Dave Blunsdon, 41, and Karen Vardy,
                > have
                > > launched the Jack's Birthday Wish campaign in a bid to raise
                > £500,000
                > > for the hospice by January 11, 2007, which would have been their
                > > son's second birthday.
                > >
                > > Karen, 33, paid tribute to staff at Chestnut Tree House.
                > >
                > > She said: "They saved our sanity. We had the respite care and we
                > had
                > > the support. We have had bereavement counselling.
                > >
                > > "It is not them just looking after a disabled child, it is about
                > > looking after the whole family. If they offer your child a
                place,
                > > there is a place for you as well."
                > >
                > > Karen added support continued after Jack's death and helped fill
                > the
                > > void left by his loss, which she described as huge.
                > >
                > > "You don't just feel the loss of having someone to look after.
                > > Nurses, physiotherapists and doctors have gone away. You don't
                > need
                > > them anymore.
                > >
                > > "At Chestnut Tree House, they are always there.
                > >
                > > "They are used to dealing with people who have lost children. I
                > can
                > > still go up to Chestnut Tree House now and have a cup of tea."
                > >
                > > The hospice currently runs at just half its full capacity. Of
                the
                > 10
                > > rooms, five are empty and unused.
                > >
                > > The £500,000 Karen and Dave hope to raise through the Jack's
                > Birthday
                > > Wish campaign would cover the cost of opening another room – and
                > > keeping it open.
                > >
                > > Karen said achieving their goal would be a fitting tribute to
                > their
                > > son.
                > > "He was very much a big character," she said.
                > >
                > > "For such a little person, who was here for such a short time,
                he
                > > made a massive impact. If we could open another bed, it would
                mean
                > > Jack's life wasn't in vain."
                > >
                > > Anyone who would like to support the campaign can complete and
                > return
                > > the form published in wht July 12 edition of the Worthing
                Herald,
                > or
                > > call Chestnut Tree House, on 01903 871820, or log on to
                > www.chestnut-
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              • patsarah2006
                This article below was in a British newspaper this week. Title: A daughter who is inspired and inspiring When Georgina Fowler was born 19 years ago, there was
                Message 7 of 8 , Oct 16, 2007
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                  This article below was in a British newspaper this week.

                  Title: A daughter who is inspired and inspiring

                  When Georgina Fowler was born 19 years ago, there was no way of
                  knowing that she had a condition that made her, quite literally, one
                  of a kind.

                  It was not until she was three years old that doctors were able to
                  put a name to the condition she had been born with - myotubular
                  myopathy.

                  "Until then," says Georgina's mother, Linda, "it had been a process
                  of elimination, with a few red herrings along the way.

                  "Conditions like myotubular myopathy are sometimes hard to diagnose.
                  All we knew was that Georgina wasn't right. As a baby she was floppy
                  and didn't feed, then as she got older she didn't hit developmental
                  milestones and did everything higgledy-piggledy. She was all over the
                  place."

                  When every other possibility had been ruled out, doctors did a muscle
                  biopsy.

                  "They said, though, that they didn't expect to find anything, but
                  they did. It was a relief to finally have a diagnosis, to know what
                  was wrong with her," says Linda.

                  Myotubular myopathy is a rare and profound muscle disease which
                  affects mainly baby boys and is life-threatening in the extreme. Only
                  25% of boys born with x-linked myotubular myopathy survive through
                  their first year and only 1% beyond the age of 10.

                  Georgina, who has the recessive form of the disease, has also been
                  diagnosed with a cardiomyopathy, making her the only person in the UK
                  to have both myotubular and cardiomyopathies.

                  "She has fought very hard," says Linda of the daughter who has
                  recently embarked on a BA Hons Contemporary Applied Arts degree
                  course at Hereford College of Arts.

                  Georgina is not the only artist in the family, though, and Linda, who
                  trained as a textile designer, but gave up work to care for Georgina,
                  has now employed her own artistic talents to produce a calendar,
                  which was launched at London's V&A Museum at the Myotubular Trust's
                  first family conference earlier this year.

                  "Georgina was my inspiration for the calendar, which I've created to
                  raise both funds and awareness for the trust," says Linda, who has
                  painted 15 favourite places' chosen by researchers and clinicians in
                  the field ofmyotubular myopathy in the UK and Europe.

                  All 12 paintings are on display at the Tidal Wave Gallery in Bridge
                  Street, until October 20, where copies of the calendar are also
                  available. They can also be bought via the website at
                  www.myotubulartrust.org

                  6:05pm Monday 15th October 2007

                  http://www.herefordtimes.com:80/news/latest/display.var.1761195.0.a_da
                  ughter_who_is_inspired_and_inspiring.php
                • Ray
                  Awesome! I m buying the calendar!...not bad for someone who did everything higgledy-piggledy . :0) ... one ... diagnose. ... floppy ... the ... muscle ...
                  Message 8 of 8 , Oct 17, 2007
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                    Awesome! I'm buying the calendar!...not bad for someone who "did
                    everything higgledy-piggledy". :0)


                    --- In Myotubular_Myopathy@yahoogroups.com, "patsarah2006"
                    <patsarah@...> wrote:
                    >
                    > This article below was in a British newspaper this week.
                    >
                    > Title: A daughter who is inspired and inspiring
                    >
                    > When Georgina Fowler was born 19 years ago, there was no way of
                    > knowing that she had a condition that made her, quite literally,
                    one
                    > of a kind.
                    >
                    > It was not until she was three years old that doctors were able to
                    > put a name to the condition she had been born with - myotubular
                    > myopathy.
                    >
                    > "Until then," says Georgina's mother, Linda, "it had been a process
                    > of elimination, with a few red herrings along the way.
                    >
                    > "Conditions like myotubular myopathy are sometimes hard to
                    diagnose.
                    > All we knew was that Georgina wasn't right. As a baby she was
                    floppy
                    > and didn't feed, then as she got older she didn't hit developmental
                    > milestones and did everything higgledy-piggledy. She was all over
                    the
                    > place."
                    >
                    > When every other possibility had been ruled out, doctors did a
                    muscle
                    > biopsy.
                    >
                    > "They said, though, that they didn't expect to find anything, but
                    > they did. It was a relief to finally have a diagnosis, to know what
                    > was wrong with her," says Linda.
                    >
                    > Myotubular myopathy is a rare and profound muscle disease which
                    > affects mainly baby boys and is life-threatening in the extreme.
                    Only
                    > 25% of boys born with x-linked myotubular myopathy survive through
                    > their first year and only 1% beyond the age of 10.
                    >
                    > Georgina, who has the recessive form of the disease, has also been
                    > diagnosed with a cardiomyopathy, making her the only person in the
                    UK
                    > to have both myotubular and cardiomyopathies.
                    >
                    > "She has fought very hard," says Linda of the daughter who has
                    > recently embarked on a BA Hons Contemporary Applied Arts degree
                    > course at Hereford College of Arts.
                    >
                    > Georgina is not the only artist in the family, though, and Linda,
                    who
                    > trained as a textile designer, but gave up work to care for
                    Georgina,
                    > has now employed her own artistic talents to produce a calendar,
                    > which was launched at London's V&A Museum at the Myotubular Trust's
                    > first family conference earlier this year.
                    >
                    > "Georgina was my inspiration for the calendar, which I've created
                    to
                    > raise both funds and awareness for the trust," says Linda, who has
                    > painted 15 favourite places' chosen by researchers and clinicians
                    in
                    > the field ofmyotubular myopathy in the UK and Europe.
                    >
                    > All 12 paintings are on display at the Tidal Wave Gallery in Bridge
                    > Street, until October 20, where copies of the calendar are also
                    > available. They can also be bought via the website at
                    > www.myotubulartrust.org
                    >
                    > 6:05pm Monday 15th October 2007
                    >
                    >
                    http://www.herefordtimes.com:80/news/latest/display.var.1761195.0.a_da
                    > ughter_who_is_inspired_and_inspiring.php
                    >
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