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11q24 deletion syndrome/ Jacobsen Syndrome

Forums / General Discussion

Welcome

Posted by

DollLady

on Nov. 29, 2007 at 3:04 PM

Group Owner

7 Replies
249 Total Views

Welcome to the group.

Let us know who you are?, where are you located? and any info you would like to share.

Dalia

Posted by

DollLady

on Nov. 29, 2007 at 3:04 PM

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Replies:

1-7 of 7 replies

ekewer

Member on Dec. 28, 2007 at 11:33 PM

My name is Erin and I have 3 kids. My youngest has JS. She just turned 2 last week. She is a very special girl. We live in Maryland. I will pass this info out to our JS groups..

janabananablue

New Member on Dec. 29, 2007 at 12:21 AM

Hi, I am Jana, single mother of 3 and my youngest, Faith, has Jacobsen's, although her deletion is at 11q23. I am near Orlando Florida. Faith is now 3 and almost walking! She also still babbles a lot but does say mama and up! of course. I used to be so excited that she said those words but now that's all she says all the time!! :) Thanks Erin for letting us know about this group!

ekewer

Member on Dec. 30, 2007 at 12:09 PM

Hey Jana so glad to see you here. How is Faith doing? Spread the word around about this group!!! Would love to see more on here.

DollLady

Group Owner on Dec. 31, 2007 at 11:33 AM

Welcome Ladies!! So glad to have you here.

Dalia

Stef79

New Member on Jan. 28, 2008 at 3:46 AM

Hello !
I am Stephanie, my first baby Charlotte has JS.
We live in france, 70km far away from Paris.
I would like to have information about feeding. Charlotte eats very low quantity and is only 6,7kg for 15 months.
Thank you !
stephanie

DollLady

Group Owner on Jan. 29, 2008 at 12:57 PM

welcome stephanie.

My Alexandra gained a pound when she turned 4 after being at 29 lbs for over a year. Alexandra also eats very little. I leave the plate on table for her to eat as she gets hungry and also have cut up fruits and finger sandwiches for her to snak on and still she is gaining weight very slowly.