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RE: [Myotubular_Myopathy]trach conference

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  • Jessica Juckers
    Hi Amanda, I was wondering if you are going to the trach conference in St louis this week. Jessica ... From: Amanda [mailto:dhahjh@yahoo.com] Sent: Tuesday, 1
    Message 1 of 25 , Jun 1, 2004
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      Message
      Hi Amanda,
      I was wondering if you are going to the trach conference in St louis this week.
      Jessica
      -----Original Message-----
      From: Amanda [mailto:dhahjh@...]
      Sent: Tuesday, 1 June 2004 1:55 AM
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Re: Matthew's Birthday

      Janice,  I am so happy for you guys!  That is so great that Matthew
      had a fantastic birthday celebration.  And good for you and Alistair
      fo making it happen for him.  I have always been in favor of making
      these boys' lives as normal and fulfilled as possible.  And grabbing
      hold of the good days is what we all do.  Whenever Jacob is sick, I
      always think of the good times and realize how precious they are. 

      Thanks for sharing with us how great Matthew's birthday weekend was. 

      Hugs, Amanda



      --- In Myotubular_Myopathy@yahoogroups.com, "Wright, Janice (J)"
      <janice.wright@s...> wrote:
      > Thanks for all the Birthday Wishes. God blessed us with another year
      > with our precious boy and we were so emotional that he had made it
      so
      > far.

      > Matthew had an amazing birthday weekend. Al and I took leave on
      Friday
      > (his actual birthday) and we celebrated the whole weekend. Matthew
      only
      > went to sleep last night (Sunday) at midnight he was on such a
      high. He
      > learnt to sing Happy Birthday, he got to spend hours in the bath,
      he was
      > outside, he got two budgies named Saturday and Sunday (Matthew's
      > favourite words) and we just had such an awesome time.

      > On the actual birthday some of his nurses arrived and we had tea and
      > cake outside. He loved the fuss and bother being made and having
      his mom
      > and dad around the whole day.

      > For his party we organised a jumping castle and a clown. The clown
      had
      > all the kids (14 incl Matthew) sitting around Matthew and he did
      balloon
      > animals, some magic and jokes. There was also some face painting and
      > Matthew had a car painted onto his hand so he could see it. At the
      end
      > we all sang "If you are happy and you know it" with Matthew doing
      all
      > the actions that he could do i.e. stick out out the tongue, shaking
      ass,
      > shaking shoulders, blinking eyes and so on. Matthew and all the kids
      > loved it - imagine being told you can stick your tongue out !!!!

      > He was spoilt rotten and had so much attention. Sometimes we worry
      that
      > Matthew is not getting stronger and that he has been quite sick this
      > year. However, if we compared last years party to this year - he sat
      > outside the whole time which he couldn't do last year, he talked, he
      > sang (If you sing Happy Birthday - he says "to you" and "Dear
      Matthew"
      > at the appropriate times), he was in the bath for an hour each day,
      he
      > could say his body parts.  Al's mom also gave him some Spiderman
      toys
      > which he played with in the bath (big boy toys). The clown also made
      > Matthew a huge butterfly out of balloons which is absolutely
      brilliant
      > as it is light and narrow enough for him to hold, but it is huge
      and he
      > so enjoys waving it around and knocking us on the heads with it.

      > He also got some preschool computer programmes which we started on
      today
      > and he just wants to hit the keys on the laptop.

      > We are still suctioning some blood, but not as much and he was well
      the
      > whole weekend. Normally when he pushes himself, he does get a bit
      sick -
      > so we are watching out for that.

      > I will update his website tonight and post some pictures of the
      party.

      > Hope you are all well and that the boys are doing so much better. I
      know
      > it is hard when they are not doing well. It is also hard reading how
      > well the other kids are doing when your own are suffering. I know
      for
      > us, the last three days are a beacon of hope for Matthew and we will
      > hold on to them when times are rough (and please remind me of them
      when
      > I get negative and in despair).

      > God Bless and stay strong.

      > Finally - welcome to the group Rita, it is so great to hear from
      you and
      > your experiences. Cant wait to see a picture of Tobias.

      > Love Janice, Alistair, Matthew and Nicholas

      >
      > Janice Wright
      >
      > HR Manager - Polythene
      >
      > e-mail : janice.wright@s... <mailto:janice.wright@s...>
      >
      > cell : 082 803 1803
      >
      > Tel : 016 920 2587
      >
      > Fax : 016 920 2144
      >

      >
      >
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    • Amanda
      As much as I would love to go to the trach conference, it is just not possible. St. Louis is about a 15-hour drive or 3 1/2 hr flight for us. I don t think
      Message 2 of 25 , Jun 2, 2004
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        As much as I would love to go to the trach conference, it is just
        not possible. St. Louis is about a 15-hour drive or 3 1/2 hr flight
        for us. I don't think either would be possible for Jacob right
        now. I am definitely planning to go next year, though.

        Love, Amanda


        --- In Myotubular_Myopathy@yahoogroups.com, "Jessica Juckers"
        <jessmark@b...> wrote:
        > Hi Amanda,
        > I was wondering if you are going to the trach conference in St
        louis
        > this week.
        > Jessica
        >
        > -----Original Message-----
        > From: Amanda [mailto:dhahjh@y...]
        > Sent: Tuesday, 1 June 2004 1:55 AM
        > To: Myotubular_Myopathy@yahoogroups.com
        > Subject: [Myotubular_Myopathy] Re: Matthew's Birthday
        >
        >
        > Janice, I am so happy for you guys! That is so great that
        Matthew
        > had a fantastic birthday celebration. And good for you and
        Alistair
        > fo making it happen for him. I have always been in favor of
        making
        > these boys' lives as normal and fulfilled as possible. And
        grabbing
        > hold of the good days is what we all do. Whenever Jacob is sick,
        I
        > always think of the good times and realize how precious they are.
        >
        > Thanks for sharing with us how great Matthew's birthday weekend
        was.
        >
        > Hugs, Amanda
        >
        >
        >
        > --- In Myotubular_Myopathy@yahoogroups.com, "Wright, Janice (J)"
        > <janice.wright@s...> wrote:
        > > Thanks for all the Birthday Wishes. God blessed us with another
        year
        > > with our precious boy and we were so emotional that he had made
        it
        > so
        > > far.
        > >
        > > Matthew had an amazing birthday weekend. Al and I took leave on
        > Friday
        > > (his actual birthday) and we celebrated the whole weekend.
        Matthew
        > only
        > > went to sleep last night (Sunday) at midnight he was on such a
        > high. He
        > > learnt to sing Happy Birthday, he got to spend hours in the
        bath,
        > he was
        > > outside, he got two budgies named Saturday and Sunday (Matthew's
        > > favourite words) and we just had such an awesome time.
        > >
        > > On the actual birthday some of his nurses arrived and we had tea
        and
        > > cake outside. He loved the fuss and bother being made and having
        > his mom
        > > and dad around the whole day.
        > >
        > > For his party we organised a jumping castle and a clown. The
        clown
        > had
        > > all the kids (14 incl Matthew) sitting around Matthew and he did
        > balloon
        > > animals, some magic and jokes. There was also some face painting
        and
        > > Matthew had a car painted onto his hand so he could see it. At
        the
        > end
        > > we all sang "If you are happy and you know it" with Matthew
        doing
        > all
        > > the actions that he could do i.e. stick out out the tongue,
        shaking
        > ass,
        > > shaking shoulders, blinking eyes and so on. Matthew and all the
        kids
        > > loved it - imagine being told you can stick your tongue out !!!!
        > >
        > > He was spoilt rotten and had so much attention. Sometimes we
        worry
        > that
        > > Matthew is not getting stronger and that he has been quite sick
        this
        > > year. However, if we compared last years party to this year - he
        sat
        > > outside the whole time which he couldn't do last year, he
        talked, he
        > > sang (If you sing Happy Birthday - he says "to you" and "Dear
        > Matthew"
        > > at the appropriate times), he was in the bath for an hour each
        day,
        > he
        > > could say his body parts. Al's mom also gave him some Spiderman
        > toys
        > > which he played with in the bath (big boy toys). The clown also
        made
        > > Matthew a huge butterfly out of balloons which is absolutely
        > brilliant
        > > as it is light and narrow enough for him to hold, but it is huge
        > and he
        > > so enjoys waving it around and knocking us on the heads with it.
        > >
        > > He also got some preschool computer programmes which we started
        on
        > today
        > > and he just wants to hit the keys on the laptop.
        > >
        > > We are still suctioning some blood, but not as much and he was
        well
        > the
        > > whole weekend. Normally when he pushes himself, he does get a
        bit
        > sick -
        > > so we are watching out for that.
        > >
        > > I will update his website tonight and post some pictures of the
        > party.
        > >
        > > Hope you are all well and that the boys are doing so much
        better. I
        > know
        > > it is hard when they are not doing well. It is also hard reading
        how
        > > well the other kids are doing when your own are suffering. I
        know
        > for
        > > us, the last three days are a beacon of hope for Matthew and we
        will
        > > hold on to them when times are rough (and please remind me of
        them
        > when
        > > I get negative and in despair).
        > >
        > > God Bless and stay strong.
        > >
        > > Finally - welcome to the group Rita, it is so great to hear from
        > you and
        > > your experiences. Cant wait to see a picture of Tobias.
        > >
        > > Love Janice, Alistair, Matthew and Nicholas
        > >
        > >
        > > Janice Wright
        > >
        > > HR Manager - Polythene
        > >
        > > e-mail : janice.wright@s... <mailto:janice.wright@s...>
        > >
        > > cell : 082 803 1803
        > >
        > > Tel : 016 920 2587
        > >
        > > Fax : 016 920 2144
        > >
        > >
        > >
        > >
        > > -----------------------------------------------------------------
        ---
        > -----
        > > NOTICE: Please note that this eMail, and the contents thereof,
        > > is subject to the standard Sasol eMail disclaimer which may be
        > found at:
        > >
        >
        http://www.sasol.com/disclaimer

        >
        > >
        > > If you cannot access the disclaimer through the URL attached and
        > you wish
        > > to receive a copy thereof please send an eMail to
        > > disclaimer@s...
        > >
        > > This email was scanned and cleared by NetIQ MailMarshal.
        > > -----------------------------------------------------------------
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      • Wright, Janice (J)
        Hi there to all those that remember Matthew and me. Just wanted to let you know that its Matthew s birthday today - he would have been 6! I hope he is having a
        Message 3 of 25 , May 28, 2007
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           Hi there to all those that remember Matthew and me. Just wanted to let you know that its Matthew’s birthday today – he would have been 6! I hope he is having a rip roaring party up there in Heaven.

           

          I still miss him terribly, and the pain hasn’t faded over the last 2 and a half years.

           

          Hang on to your babes and cherish them every day.

           

          Keep well

           

          Janice


          NOTICE: Please note that this eMail, and the contents thereof, is subject to the standard Sasol eMail legal notice which may be found at: http://www.sasol.com/legalnotices

          If you cannot access the legal notice through the URL attached and you wish to receive a copy thereof please send an eMail to legalnotice@...


        • Elizabeth Peil
          Hello Janice, my heart goes out to you on Matthews birthday. Happy 6th Birthday Matthew. I am sure you are up in heaven having a wonderful birthday. Love
          Message 4 of 25 , May 28, 2007
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            Hello Janice, my heart goes out to you on Matthews birthday.  Happy 6th Birthday Matthew.  I am sure you are up in heaven having a wonderful birthday.  Love and kisses.
             
            Chuck, Liz, Pollux, Chaz and Aubrey


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          • Amanda Hollingsworth
            Hello Janice, I think of Matthew often. I m sure he is having that party in Heaven. Hugs to you and your family. Love, Amanda Hollingsworth Wright, Janice
            Message 5 of 25 , May 28, 2007
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              Hello Janice,
               
              I think of Matthew often. I'm sure he is having that party in Heaven.
               
              Hugs to you and your family.
               
              Love, Amanda Hollingsworth

              "Wright, Janice (J)" <janice.wright@...> wrote:
               Hi there to all those that remember Matthew and me. Just wanted to let you know that its Matthew’s birthday today – he would have been 6! I hope he is having a rip roaring party up there in Heaven.
               
              I still miss him terribly, and the pain hasn’t faded over the last 2 and a half years.
               
              Hang on to your babes and cherish them every day.
               
              Keep well
               
              Janice

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            • Anne Lennox
              Janice my dear my heart goes out to you. With love Anne and family _____ From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]
              Message 6 of 25 , May 28, 2007
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                Janice my dear
                my heart goes out to you. 
                With love
                Anne and family

                From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Wright, Janice (J)
                Sent: 28 May 2007 13:40
                To: Myotubular_Myopathy@yahoogroups.com
                Subject: [Myotubular_Myopathy] Matthew's Birthday

                 Hi there to all those that remember Matthew and me. Just wanted to let you know that its Matthew’s birthday today – he would have been 6! I hope he is having a rip roaring party up there in Heaven.

                I still miss him terribly, and the pain hasn’t faded over the last 2 and a half years.

                Hang on to your babes and cherish them every day.

                Keep well

                Janice


                NOTICE: Please note that this eMail, and the contents thereof, is subject to the standard Sasol eMail legal notice which may be found at: http://www.sasol. com/legalnotices

                If you cannot access the legal notice through the URL attached and you wish to receive a copy thereof please send an eMail to legalnotice@ sasol.com


              • Wendy
                Hi Janice, I remember Matthew very well - and it doesn t seem very long ago since we first corresponded about your beautiful boy. I dearly hope that you can
                Message 7 of 25 , May 28, 2007
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                  Hi Janice, I remember Matthew very well – and it doesn’t seem very long ago since we first corresponded about your beautiful boy.  I dearly hope that you can reflect and focus on enjoying warm and ha

                  (Message over 64 KB, truncated)

                • Shannon Mashinchi
                  Janice, It seems like only yesterday that I read about Matthew s passing and the world I knew came crashing around me. Matthew was not far ahead of Javad...you
                  Message 8 of 25 , May 29, 2007
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                    Janice,

                    It seems like only yesterday that I read about Matthew's passing and the world I knew
                    came crashing around me. Matthew was not far ahead of Javad...you were the one that I
                    looked to for guidance on the path ahead.

                    I think about you often and remember Matthew and his smiling face, his "shake your ..."

                    He will never be forgotten...his life touched us all!

                    Shannon



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                  • DARLENE MILLER
                    Hi Janice, It is great to hear from you. I was just talking about you and your family to a friend of mine last week. I think about Matthew a lot. Kyle and I
                    Message 9 of 25 , May 29, 2007
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                      Hi Janice,
                       
                      It is great to hear from you.  I was just talking about  you and your
                      family to a friend of mine last week.  I think about Matthew a lot.
                      Kyle and I were looking at  pictures of Matthew and Nicholas on
                      Saturday (the ones you sent in November 2004).   Everytime I tell
                      someone about our boys I always seem to talk about Matthew and
                      how smart he was.  Even though I never really met him, he has
                      made an ever lasting impression on our lives.  I don't think I will
                      ever forget him. 
                       
                      Darlene
                       
                       
                      ----- Original Message -----
                      Sent: Monday, May 28, 2007 8:39 AM
                      Subject: [Myotubular_Myopathy] Matthew's Birthday

                       Hi there to all those that remember Matthew and me. Just wanted to let you know that its Matthew's birthday today - he would have been 6! I hope he is having a rip roaring party up there in Heaven.

                      I still miss him terribly, and the pain hasn't faded over the last 2 and a half years.

                      Hang on to your babes and cherish them every day.

                      Keep well

                      Janice


                      NOTICE: Please note that this eMail, and the contents thereof, is subject to the standard Sasol eMail legal notice which may be found at: http://www.sasol. com/legalnotices

                      If you cannot access the legal notice through the URL attached and you wish to receive a copy thereof please send an eMail to legalnotice@ sasol.com


                    • Anne Lennox
                      Dear all Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my arms, having struggled long and hard to stay with us. His little body just simply
                      Message 10 of 25 , May 30, 2007
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                        Dear all
                        Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my arms, having struggled long and hard to stay with us.  His little body just simply gave out, he tried and tried and tried to stay with us - for our sakes I think.  And in the end it seemed like peace settled over him.
                         
                        We loved him beyond measure - he was an incredible human being and showed us a way of being that humbled the most humble.  He touched so many lives - there is literally a queue of people through our house at the moment to say goodbye, and there are people flying in from as far away as Australia and Bahrain to see him before his funeral.  I am in awe of him.
                         
                        We have a book of condolence on www.olennox.com and funeral arrangements are there too.
                         
                        Thank you all for your love and support these bitter sweet 3 years and 10 months, I'll never forget you all and your beautiful children
                         
                        With love
                         
                        Anne, Andrew, Sophie and our little angel Tom

                      • Abbie harrison
                        Anne, I am so sorry for your loss, but I must always think that the children who leave us really do go to a better place where they are pain free and watching
                        Message 11 of 25 , May 30, 2007
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                          Anne,
                            I am so sorry for your loss, but I must always think that the children who leave us really do go to a better place where they are pain free  and watching over us.  God needed a new angel at his side and it is clear he has chosen Tom.  I know he will forever be watchin over you.  My prayers are with you in this time of need.
                          Abbie Howeth

                          Anne Lennox <anne@...> wrote:
                          Dear all
                          Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my arms, having struggled long and hard to stay with us.  His little body just simply gave out, he tried and tried and tried to stay with us - for our sakes I think.  And in the end it seemed like peace settled over him.
                           
                          We loved him beyond measure - he was an incredible human being and showed us a way of being that humbled the most humble.  He touched so many lives - there is literally a queue of people through our house at the moment to say goodbye, and there are people flying in from as far away as Australia and Bahrain to see him before his funeral.  I am in awe of him.
                           
                          We have a book of condolence on www.olennox. com and funeral arrangements are there too.
                           
                          Thank you all for your love and support these bitter sweet 3 years and 10 months, I'll never forget you all and your beautiful children
                           
                          With love
                           
                          Anne, Andrew, Sophie and our little angel Tom


                        • SIMONE
                          Anne I am so saddened to hear of Toms passing. I have left a message on your condolesences book. We were also amazed when our beautiful Trent passed at the
                          Message 12 of 25 , May 30, 2007
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                            Anne
                            I am so saddened to hear of Toms passing. I have left a message on
                            your condolesences book. We were also amazed when our beautiful
                            Trent passed at the number of people whos lives he touched and
                            changed. Life is so short especially for these precious boys. I
                            wish I could fly over to be there for the funeral but Australia is
                            just so far away.
                            SHould you ever feel like getting away please know that we have
                            plenty of room in our house.
                            Take care
                            simone

                            --- In Myotubular_Myopathy@yahoogroups.com, "Anne Lennox" <anne@...>
                            wrote:
                            >
                            > Dear all
                            > Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my
                            arms,
                            > having struggled long and hard to stay with us. His little body
                            just simply
                            > gave out, he tried and tried and tried to stay with us - for our
                            sakes I
                            > think. And in the end it seemed like peace settled over him.
                            >
                            > We loved him beyond measure - he was an incredible human being and
                            showed us
                            > a way of being that humbled the most humble. He touched so many
                            lives -
                            > there is literally a queue of people through our house at the
                            moment to say
                            > goodbye, and there are people flying in from as far away as
                            Australia and
                            > Bahrain to see him before his funeral. I am in awe of him.
                            >
                            > We have a book of condolence on www.olennox.com and funeral
                            arrangements are
                            > there too.
                            >
                            > Thank you all for your love and support these bitter sweet 3 years
                            and 10
                            > months, I'll never forget you all and your beautiful children
                            >
                            > With love
                            >
                            > Anne, Andrew, Sophie and our little angel Tom
                            >
                            > <http://geo.yahoo.com/serv?
                            s=97359714/grpId=2388254/grpspId=1705061589/msgId
                            > =4691/stime=1180469874/nc1=3848647/nc2=3848443/nc3=4025325>
                            >
                          • Pat or Sarah
                            Anne and family, I am so sorry for your loss of your son Tom. Our hearts and prayers go out to you. Sarah
                            Message 13 of 25 , May 31, 2007
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                              Anne and family, I am so sorry for your loss of your son Tom.  Our hearts and prayers go out to you.  Sarah
                            • Scott & Betsy Grant
                              Anne and family, I am so sorry to hear the news about your beautiful son. I went to the website and left a note there. Betsy
                              Message 14 of 25 , May 31, 2007
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                                Anne and family, I am so sorry to hear the news about your beautiful son. I went to the website and left a note there.
                                Betsy

                                On 5/31/07, Pat or Sarah <patsarah@...> wrote:

                                Anne and family, I am so sorry for your loss of your son Tom.  Our hearts and prayers go out to you.  Sarah


                              • Shannon Mashinchi
                                I am so sorry to hear of Tom s passing. My heart just breaks for you and your entire family. His life touched us all as well as your dedication to him and his
                                Message 15 of 25 , May 31, 2007
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                                  I am so sorry to hear of Tom's passing. My heart just breaks for you and your entire
                                  family. His life touched us all as well as your dedication to him and his life.

                                  Shannon Mashinchi


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                                • DARLENE MILLER
                                  Anne and Family, We are sorry to hear of Tom s passing. This is not something I expected to hear about him. We just wanted you to know you are in our
                                  Message 16 of 25 , May 31, 2007
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                                    Anne and Family,
                                     
                                    We are sorry to hear of Tom's passing.  This is not something
                                    I expected to hear about him.  We just wanted you to know
                                    you are in our thoughts and prayers. 
                                     
                                    Darlene and Kyle
                                     
                                    ----- Original Message -----
                                    Sent: Wednesday, May 30, 2007 1:45 PM
                                    Subject: [Myotubular_Myopathy] Tom, my angel

                                    Dear all
                                    Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my arms, having struggled long and hard to stay with us.  His little body just simply gave out, he tried and tried and tried to stay with us - for our sakes I think.  And in the end it seemed like peace settled over him.
                                     
                                    We loved him beyond measure - he was an incredible human being and showed us a way of being that humbled the most humble.  He touched so many lives - there is literally a queue of people through our house at the moment to say goodbye, and there are people flying in from as far away as Australia and Bahrain to see him before his funeral.  I am in awe of him.
                                     
                                    We have a book of condolence on www.olennox. com and funeral arrangements are there too.
                                     
                                    Thank you all for your love and support these bitter sweet 3 years and 10 months, I'll never forget you all and your beautiful children
                                     
                                    With love
                                     
                                    Anne, Andrew, Sophie and our little angel Tom

                                  • Kimberly Kowalski
                                    anne and family, i am so deeply saddened to hear of tom s passing. i have no words to offer just love, peace and strength during this most difficult time. my
                                    Message 17 of 25 , Jun 1, 2007
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                                      anne and family,

                                      i am so deeply saddened to hear of tom's passing. i
                                      have no words to offer just love, peace and strength
                                      during this most difficult time. my family's hearts
                                      and prayers are with you all.

                                      kim
                                      --- Anne Lennox <anne@...> wrote:

                                      > Dear all
                                      > Our beloved Tom died yesterday morning, 29th May at
                                      > 1.20 am, in my arms,
                                      > having struggled long and hard to stay with us. His
                                      > little body just simply
                                      > gave out, he tried and tried and tried to stay with
                                      > us - for our sakes I
                                      > think. And in the end it seemed like peace settled
                                      > over him.
                                      >
                                      > We loved him beyond measure - he was an incredible
                                      > human being and showed us
                                      > a way of being that humbled the most humble. He
                                      > touched so many lives -
                                      > there is literally a queue of people through our
                                      > house at the moment to say
                                      > goodbye, and there are people flying in from as far
                                      > away as Australia and
                                      > Bahrain to see him before his funeral. I am in awe
                                      > of him.
                                      >
                                      > We have a book of condolence on www.olennox.com and
                                      > funeral arrangements are
                                      > there too.
                                      >
                                      > Thank you all for your love and support these bitter
                                      > sweet 3 years and 10
                                      > months, I'll never forget you all and your beautiful
                                      > children
                                      >
                                      > With love
                                      >
                                      > Anne, Andrew, Sophie and our little angel Tom
                                      >
                                      >
                                      <http://geo.yahoo.com/serv?s=97359714/grpId=2388254/grpspId=1705061589/msgId
                                      >
                                      =4691/stime=1180469874/nc1=3848647/nc2=3848443/nc3=4025325>
                                      >
                                      >
                                      >




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                                    • Amanda Hollingsworth
                                      Please know that your family has our deepest condolences and our thoughts are with you. The Hollingsworth Family - Amanda, Dennis, Jacob Kimberly Kowalski
                                      Message 18 of 25 , Jun 1, 2007
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                                        Please know that your family has our deepest condolences and our thoughts are with you.
                                         
                                        The Hollingsworth Family - Amanda, Dennis, Jacob

                                        Kimberly Kowalski <kimmyk47@...> wrote:
                                        anne and family,

                                        i am so deeply saddened to hear of tom's passing. i
                                        have no words to offer just love, peace and strength
                                        during this most difficult time. my family's hearts
                                        and prayers are with you all.

                                        kim
                                        --- Anne Lennox wrote:

                                        > Dear all
                                        > Our beloved Tom died yesterday morning, 29th May at
                                        > 1.20 am, in my arms,
                                        > having struggled long and hard to stay with us. His
                                        > little body just simply
                                        > gave out, he tried and tried and tried to stay with
                                        > us - for our sakes I
                                        > think. And in the end it seemed like peace settled
                                        > over him.
                                        >
                                        > We loved him beyond measure - he was an incredible
                                        > human being and showed us
                                        > a way of being that humbled the most humble. He
                                        > touched so many lives -
                                        > there is literally a queue of people through our
                                        > house at the moment to say
                                        > goodbye, and there are people flying in from as far
                                        > away as Australia and
                                        > Bahrain to see him before his funeral. I am in awe
                                        > of him.
                                        >
                                        > We have a book of condolence on www.olennox.com and
                                        > funeral arrangements are
                                        > there too.
                                        >
                                        > Thank you all for your love and support these bitter
                                        > sweet 3 years and 10
                                        > months, I'll never forget you all and your beautiful
                                        > children
                                        >
                                        > With love
                                        >
                                        > Anne, Andrew, Sophie and our little angel Tom
                                        >
                                        >
                                        >
                                        =4691/stime=1180469874/nc1=3848647/nc2=3848443/nc3=4025325>
                                        >
                                        >
                                        >




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                                      • angela huss
                                        My sympathies are with you and your family during these difficult times. If you need an ear, please email me. Sincerely, Randy, Angie, Danielle, and Cherisse
                                        Message 19 of 25 , Jun 1, 2007
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                                          My sympathies are with you and your family during these difficult times. If you need an ear, please email me. Sincerely,
                                           
                                          Randy, Angie, Danielle, and Cherisse ^j^ Patrick ^j^MTM, 26 wker 9/17/99 ~ 2/3/05

                                          Amanda Hollingsworth <adhollingsworth0102@...> wrote:
                                          Please know that your family has our deepest condolences and our thoughts are with you.
                                           
                                          The Hollingsworth Family - Amanda, Dennis, Jacob

                                          Kimberly Kowalski <kimmyk47@yahoo. com> wrote:
                                          anne and family,

                                          i am so deeply saddened to hear of tom's passing. i
                                          have no words to offer just love, peace and strength
                                          during this most difficult time. my family's hearts
                                          and prayers are with you all.

                                          kim
                                          --- Anne Lennox wrote:

                                          > Dear all
                                          > Our beloved Tom died yesterday morning, 29th May at
                                          > 1.20 am, in my arms,
                                          > having struggled long and hard to stay with us. His
                                          > little body just simply
                                          > gave out, he tried and tried and tried to stay with
                                          > us - for our sakes I
                                          > think. And in the end it seemed like peace settled
                                          > over him.
                                          >
                                          > We loved him beyond measure - he was an incredible
                                          > human being and showed us
                                          > a way of being that humbled the most humble. He
                                          > touched so many lives -
                                          > there is literally a queue of people through our
                                          > house at the moment to say
                                          > goodbye, and there are people flying in from as far
                                          > away as Australia and
                                          > Bahrain to see him before his funeral. I am in awe
                                          > of him.
                                          >
                                          > We have a book of condolence on www.olennox. com and
                                          > funeral arrangements are
                                          > there too.
                                          >
                                          > Thank you all for your love and support these bitter
                                          > sweet 3 years and 10
                                          > months, I'll never forget you all and your beautiful
                                          > children
                                          >
                                          > With love
                                          >
                                          > Anne, Andrew, Sophie and our little angel Tom
                                          >
                                          >
                                          >
                                          =4691/stime= 1180469874/ nc1=3848647/ nc2=3848443/ nc3=4025325>
                                          >
                                          >
                                          >




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                                        • masonsparents
                                          Janice & Family: We often think of Matthew, and wish you comfort and positive remembrances of your wonderful little boy. Mason is turning 6 next week. This
                                          Message 20 of 25 , Jun 3, 2007
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                                            Janice & Family:

                                            We often think of Matthew, and wish you comfort and positive
                                            remembrances of your wonderful little boy. Mason is turning 6 next
                                            week. This past year has been a little rough and has shown us how
                                            truly special our time with him is.

                                            -Fontana Family
                                            Chico, CA



                                            --- In Myotubular_Myopathy@yahoogroups.com, "Wright, Janice \(J\)"
                                            <janice.wright@...> wrote:
                                            >
                                            > Hi there to all those that remember Matthew and me. Just wanted to
                                            let
                                            > you know that its Matthew's birthday today - he would have been 6! I
                                            > hope he is having a rip roaring party up there in Heaven.
                                            >
                                            >
                                            >
                                            > I still miss him terribly, and the pain hasn't faded over the last
                                            2 and
                                            > a half years.
                                            >
                                            >
                                            >
                                            > Hang on to your babes and cherish them every day.
                                            >
                                            >
                                            >
                                            > Keep well
                                            >
                                            >
                                            >
                                            > Janice
                                            >
                                            >
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                                          • masonsparents
                                            Anne & Family: We are deeply saddened to hear of your son s passing. Please accept our sympathies, I m sure he was a wonderful little boy. Fontana Family
                                            Message 21 of 25 , Jun 3, 2007
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                                              Anne & Family:

                                              We are deeply saddened to hear of your son's passing. Please accept
                                              our sympathies, I'm sure he was a wonderful little boy.

                                              Fontana Family
                                              Chico, California



                                              --- In Myotubular_Myopathy@yahoogroups.com, "Anne Lennox" <anne@...>
                                              wrote:
                                              >
                                              > Dear all
                                              > Our beloved Tom died yesterday morning, 29th May at 1.20 am, in my
                                              arms,
                                              > having struggled long and hard to stay with us. His little body
                                              just simply
                                              > gave out, he tried and tried and tried to stay with us - for our
                                              sakes I
                                              > think. And in the end it seemed like peace settled over him.
                                              >
                                              > We loved him beyond measure - he was an incredible human being and
                                              showed us
                                              > a way of being that humbled the most humble. He touched so many
                                              lives -
                                              > there is literally a queue of people through our house at the
                                              moment to say
                                              > goodbye, and there are people flying in from as far away as
                                              Australia and
                                              > Bahrain to see him before his funeral. I am in awe of him.
                                              >
                                              > We have a book of condolence on www.olennox.com and funeral
                                              arrangements are
                                              > there too.
                                              >
                                              > Thank you all for your love and support these bitter sweet 3 years
                                              and 10
                                              > months, I'll never forget you all and your beautiful children
                                              >
                                              > With love
                                              >
                                              > Anne, Andrew, Sophie and our little angel Tom
                                              >
                                              > <http://geo.yahoo.com/serv?
                                              s=97359714/grpId=2388254/grpspId=1705061589/msgId
                                              > =4691/stime=1180469874/nc1=3848647/nc2=3848443/nc3=4025325>
                                              >
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