Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Dear So grateful for the advice, I cant believe you found stuff on Bianchi, Amelie is is this very hospital it is 5 miles from where we live, I walked past his door with his name on last night, its in the intensive care unit, maybe hes one of the team we are waiting to see on Tuesday, but i didnt have a clue who he was, how bizzare!! I hope this woman Debra logs on soon to help us further, I dont think we will have any choice in the type of surgery they will decide , we just have to accept in order to give her a chance we must accept what ever, I hope it is reversable, maybe later in life she will get to taste food. Million thanks Lesley x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Dear Lesley, I am glad it sounds like you have a global expert in the procedure that Ameile might need, right there in Manchester childrens hospital. That is a small comfort and stroke of luck. I am following all your updates, hoping for improvements and keeping everything crossed for little Ameile...love to you and the whole family. is (Mum to ) > > Dear > > So grateful for the advice, I cant believe you found stuff on Bianchi, > Amelie is is this very hospital it is 5 miles from where we live, I > walked past his door with his name on last night, its in the intensive > care unit, maybe hes one of the team we are waiting to see on Tuesday, > but i didnt have a clue who he was, how bizzare!! > > I hope this woman Debra logs on soon to help us further, I dont think > we will have any choice in the type of surgery they will decide , we > just have to accept in order to give her a chance we must accept what > ever, > > I hope it is reversable, maybe later in life she will get to taste > food. > > Million thanks > Lesley x > > > > > > > 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 - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 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 January 4, 2006 Report Share Posted January 4, 2006 In a message dated 1/2/2006 6:00:39 AM Pacific Standard Time, alexiswolfe@... writes: I hope this woman Debra logs on soon to help us further, I dont think > we will have any choice in the type of surgery they will decide Hello, this is Debra on. I didn't recognize the contents of the email so I am writing you in case you were looking for me. If there is anything I can do or assist you with, please don't hesitate contacting me directly. My email address is: _dw33333333@..._ (mailto:dw33333333@...) If you need to talk to me personally, feel free to call me. I live in Indiana and my number is . Debra on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 In a message dated 1/1/2006 8:54:19 AM Pacific Standard Time, lesleychan@... writes: Debra logs on soon to help us further, I have sent you an email, hope you got it and hope it was in time. I was off the computer for a couple of weeks due to the holidays and all my children being home. If there is anything else I can do, please don't hesitate to email me and/or have any medical staff contact me. I can even put them in touch with the doctors that helped Zak. When you email me, make sure you put my name in the subject line as I don't open many emails that I don't recognize the subject anymore. Too many viruses out there. I am here for you and Amelie. Never hesitate to ask for my help. Debra W. Quote Link to comment Share on other sites More sharing options...
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