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...
Hi Everyone: This is Sandy, Jade's grandmother. I would like to know if anyone in this group is from Texas. My daughter, Nicole and her husband has gotten...
I know we used to have afew parents in that area. We went for research in Dallas at one of the Children's hosptial . I will try to remember who is down there....
I recently found this website and was going to post it, especially because it will provide funding for families to attend conferences. Then I just had it sent...
Thanks so much for the site. We were told when Grace got sick at age 10 she had undiagnosed type Leukodystrophy.She almost died from it and was given a...
Here is a number to try. If they can't take her being at the children's hospital I am sure they can refer Her. Pediatric Genetic Clinic Clinical Care...
Hi, my daughter Leah (18) also went through a period where she would get up in the middle of the night and shut all the doors in our apartment. Never quite...
My son Dylan (7) is VERY ocd with his collections, at the moment its string of all sorts and colors and playing cards, plain ones, uno etc.. he sorts them all...
Hi everyone, My son Brady is 21 months old. A couple of weeks ago we had an MRI and the results showed that he didn't have as much mylein as he should around...
Yes Grace has always had this problem. It realy showed when she hit a big growth spree at age ten. I will tell you they gave her extra folic acid to help hers...
Hi Meredith The exact same thing happened with my little Abigail this summer Apparently this is a typical Jacobsens Syndrome thing Would you like to talk? ...
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...
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...
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 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:...
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- 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...
Did you get someone to help you? From: beckie Sent: Saturday, November 08, 2008 5:34 PM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] question we...
I have a vendor that will make me wrist bands (the rubber ones) for $2.00 each that says Jacobsen's Syndrome They are grey in color. They are awareness bands....
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:...
In a message dated 11/10/2008 8:23:51 A.M. Central Standard Time, erinkewer@... writes: I have a vendor that will make me wrist bands (the rubber ones)...
Great thanks From: SANDYCST1@... Sent: Monday, November 10, 2008 9:45 AM To: 11q_disorders@yahoogroups.com Subject: Re: [11q_disorders] Jacobsens Awareness...
ERIN WE WILL TAKE 10 BANDS IF YOU DO ORDER THEM. LET ME KNOW WHEN, WHERE, HOW MUCH I OWE AND WHERE TO SEND THE MONEY,ETC. DO YOU WANT CHECK, MONEY ORDER ...
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