Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I am sorry.. Thinking of you and your family all the way from Australia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Dear Sue, I am so sorry for your loss. I can imagine your journey is one that has left you feeling so many different emotions. God bless you and your sweet little girl. She will no longer suffer and is truly, as you say, with all the other angels. Take care and be well, > > Hi All, Thanks for all your supports since I joined this group. Just want to tell you that my daughter pass away yesterday. She has returned to God and being with other little angles. --Sue > > Just had a baby with charge > > Hi Everyone, > > I just started reading some e-mails in this group. All your e-mails > sound like life is so normal and there can still be time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is a charge baby. > She came with inner ear malformation, possible swallowing > difficulties and airway issue (first was trachea web, then sugotal > stenosis, and now the dr thinks it is tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming and unsure what I > should do next. Doctor wants to give her a trach, and I am not sure > if the trach will come off one day thinking about charge is so > complicated. I have been surfing on web to see how life can be for a > charge child. And deep down I feel that a painful and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can eventually find a > balance from this life change. By the way, we live in north New > Jersey in US. Hopefully I can find some of you who may be near by. > > Sue > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Dear Sue, I am so sorry for your loss. I can imagine your journey is one that has left you feeling so many different emotions. God bless you and your sweet little girl. She will no longer suffer and is truly, as you say, with all the other angels. Take care and be well, > > Hi All, Thanks for all your supports since I joined this group. Just want to tell you that my daughter pass away yesterday. She has returned to God and being with other little angles. --Sue > > Just had a baby with charge > > Hi Everyone, > > I just started reading some e-mails in this group. All your e-mails > sound like life is so normal and there can still be time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is a charge baby. > She came with inner ear malformation, possible swallowing > difficulties and airway issue (first was trachea web, then sugotal > stenosis, and now the dr thinks it is tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming and unsure what I > should do next. Doctor wants to give her a trach, and I am not sure > if the trach will come off one day thinking about charge is so > complicated. I have been surfing on web to see how life can be for a > charge child. And deep down I feel that a painful and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can eventually find a > balance from this life change. By the way, we live in north New > Jersey in US. Hopefully I can find some of you who may be near by. > > Sue > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Sue, I am sorry to hear of your daughter's passing. Know I am thinking of you and your family. pam (Boston, MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Sue, I am sorry to hear of your daughter's passing. Know I am thinking of you and your family. pam (Boston, MA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Sue- My heart aches for you. I'm so sorry for your loss and for the trauma these past months must have been for all of you, including Kiera. You are not alone in losing a child to CHARGE. Maybe you can find some comfort in knowing that Kiera has a family of CHARGE angels playing with her -- and you still belong to our CHARGE family as long as you find comfort here. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Sue- My heart aches for you. I'm so sorry for your loss and for the trauma these past months must have been for all of you, including Kiera. You are not alone in losing a child to CHARGE. Maybe you can find some comfort in knowing that Kiera has a family of CHARGE angels playing with her -- and you still belong to our CHARGE family as long as you find comfort here. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Michele, Thanks. --Sue > > Sue- > My heart aches for you. I'm so sorry for your loss and for the trauma these > past months must have been for all of you, including Kiera. You are not > alone in losing a child to CHARGE. Maybe you can find some comfort in > knowing that Kiera has a family of CHARGE angels playing with her -- and you > still belong to our CHARGE family as long as you find comfort here. > > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hugs and blessings to you. Kim > Hi All, Thanks for all your supports since I joined this group. Just want to > tell you that my daughter pass away yesterday. She has returned to God and > being with other little angles. --Sue > > Just had a baby with charge > > Hi Everyone, > > I just started reading some e-mails in this group. All your e-mails > sound like life is so normal and there can still be time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is a charge baby. > She came with inner ear malformation, possible swallowing > difficulties and airway issue (first was trachea web, then sugotal > stenosis, and now the dr thinks it is tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming and unsure what I > should do next. Doctor wants to give her a trach, and I am not sure > if the trach will come off one day thinking about charge is so > complicated. I have been surfing on web to see how life can be for a > charge child. And deep down I feel that a painful and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can eventually find a > balance from this life change. By the way, we live in north New > Jersey in US. Hopefully I can find some of you who may be near by. > > Sue > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hugs and blessings to you. Kim > Hi All, Thanks for all your supports since I joined this group. Just want to > tell you that my daughter pass away yesterday. She has returned to God and > being with other little angles. --Sue > > Just had a baby with charge > > Hi Everyone, > > I just started reading some e-mails in this group. All your e-mails > sound like life is so normal and there can still be time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is a charge baby. > She came with inner ear malformation, possible swallowing > difficulties and airway issue (first was trachea web, then sugotal > stenosis, and now the dr thinks it is tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming and unsure what I > should do next. Doctor wants to give her a trach, and I am not sure > if the trach will come off one day thinking about charge is so > complicated. I have been surfing on web to see how life can be for a > charge child. And deep down I feel that a painful and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can eventually find a > balance from this life change. By the way, we live in north New > Jersey in US. Hopefully I can find some of you who may be near by. > > Sue > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hugs and blessings to you. Kim > Hi All, Thanks for all your supports since I joined this group. Just want to > tell you that my daughter pass away yesterday. She has returned to God and > being with other little angles. --Sue > > Just had a baby with charge > > Hi Everyone, > > I just started reading some e-mails in this group. All your e-mails > sound like life is so normal and there can still be time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is a charge baby. > She came with inner ear malformation, possible swallowing > difficulties and airway issue (first was trachea web, then sugotal > stenosis, and now the dr thinks it is tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming and unsure what I > should do next. Doctor wants to give her a trach, and I am not sure > if the trach will come off one day thinking about charge is so > complicated. I have been surfing on web to see how life can be for a > charge child. And deep down I feel that a painful and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can eventually find a > balance from this life change. By the way, we live in north New > Jersey in US. Hopefully I can find some of you who may be near by. > > Sue > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Sue, I know there is nothing that anyone can say or do to make you feel better,just know your Angel is in heaven,safe in the arms of Jesus. If roses grow in heaven,Lord,please pick a bunch for me and give it to Sue,wisper its from me Lord,lift her spirits high today and keep her in your care. Please email me at my personal email adress if you need to talk,I also have an angel in heaven,and know the pain you are going trough. Love Bonni - South Africa. bcoetzer@... Just had a baby with charge Hi Everyone, I just started reading some e-mails in this group. All your e-mails sound like life is so normal and there can still be time for relaxation. It is nice to see that. I just had a baby girl, Keira, two months ago who is a charge baby. She came with inner ear malformation, possible swallowing difficulties and airway issue (first was trachea web, then sugotal stenosis, and now the dr thinks it is tracheomalacia). She is still in the NICU. I think I am still in a stage of quite overwhelming and unsure what I should do next. Doctor wants to give her a trach, and I am not sure if the trach will come off one day thinking about charge is so complicated. I have been surfing on web to see how life can be for a charge child. And deep down I feel that a painful and rough journey is just started for her. I look forward to chat with you. Maybe I can eventually find a balance from this life change. By the way, we live in north New Jersey in US. Hopefully I can find some of you who may be near by. Sue CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Sue, I do not think I can find words to say to comfort you at this time. Please know I will hold your daughter, you and your family closely in my prayers. May you find that Keira is happy, content and loving you forever. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
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