Erin I will try hard to find you pictures of Grace at all ages and send them.I have pulled some. She is 33 now. Boy what we have been threw. Even now people dont' relaize what 11q- is and what can go wrong. But they are learning.We were told to let her die .We would have missed so much.God bless you Have a wonderful week ahead. Peggy St Clair
--- On Wed, 11/5/08, Erin <erinkewer@live.com> wrote:
From: Erin <erinkewer@live.com> Subject: [11q_disorders] Jacobsen's Syndrome Website To: 11q_disorders@yahoogroups.com Date: Wednesday, November 5, 2008, 8:28 PM
I am still looking for stories for the website. If you have not seen it yet you can go to www.jacobsenssyndro meawareness. com Please email me your stories and also any pictures that you want me to put on the site. Please give me your feedback, Im looking for ideas for the site if you have any please let me know. Erin
I am creating a website with all the information about JS for people to read and get help with the syndrome. I would love for some of you to be a part of the...
I am still looking for stories for the website. If you have not seen it yet you can go to www.jacobsenssyndromeawareness.com Please email me your stories and...
Erin I will try hard to find you pictures of Grace at all ages and send them.I have pulled some. She is 33 now. Boy what we have been threw. Even now people...
Thanks Peggy I would love pics and if you can just a short story about her. thank!! From: Peggy St.Clair Sent: Wednesday, November 05, 2008 9:48 PM To:...
Hi Erin, Sorry its taken so long to get to you about our story. Nick was born May 21st 1996 and was hospitalized for 20 in the NICU. It was there he was...
Joan- Â I was wondering if you could give me more information on the eye surgery Nick had?? My daughter Brooke will be 1 in a few weeks and is having issues...
Hi Erin, I am working on something for you and it should be done in the next few days. Well done again for making the website, you are a champion. Cheers Marie...
thanks Marie cant wait to read it! From: dylansmum77 Sent: Thursday, November 06, 2008 4:14 AM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] Re:...
Thanks Joan From: joan romig Sent: Thursday, November 06, 2008 1:06 AM To: 11q_disorders@yahoogroups.com Subject: Re: [11q_disorders] Jacobsen's Syndrome...
Joan did you have anymore pictures you can send? From: joan romig Sent: Thursday, November 06, 2008 1:06 AM To: 11q_disorders@yahoogroups.com Subject: Re:...
Hi Erin, I wanted t let you know i posted some more pics to the website photo album, you take the pics fromthere is you want. Any questions, please contact me ...
That's wonderful. I will go on there now!! If anyone else wants to send me their stories or photos please do so. I have been getting a lot of hits to the site...
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