I am looking for a Spanish speaking family with a JS child that would be willing to contact another family with a JS baby. They are looking for someone to...
They might not be able to give you the address of this family due to Hippa Law but ask if they have an address and they will mail this person requesting they...
I need to know if any of your JS kids are taking any medication for behavioral problems - attention deficit/hyperactivity disorder. Matthew's behavior...
Tina, Oh this sounds so familiar. I have two JS boys and they are both very different, but both have a lot of behavioral problems. I had to try some...
The dr told me to try SAM-E on Grace. But I have also ordered a herbal tantrum med for autisic children..It is suppose to really make adifferance in these...
Hi I am Spanish speaking and will be glad to talk to the Other family!!! Please send me the info or give them my email Gabriela Mazariegos Sent from my iPhone ...
My daughter Serena also has epilepsy. Pick a type of seizure and she's had it. She is on Phenobarbital, Keppra, and Clorasapate. These seem to help unless...
Found out a couple weeks ago that Serena has been diagnosed with SCID (also known as Severe Combined Immune Deficiency Disorder) and JAK 3 protien deficiency....
Faith has very low T-Cells also. But we leave it alone for now because she doesn't get more infections than we would expect just with her heart defect.. ...
Erin, You and Serena are in my prayers. I hope she feels better soon and that you get some rest as well! Everyone, We checked Ayah into the hospital for video...
I have added some more articles to the website http://www.jacobsenssyndromeawareness.com with the help of Dr. Grossfeld's medical student Tony Weber. Please...
hi i am an Arabic speaker , and i have an 7 months old doughter (11Q) dose anyone know an Arabic speaker family who has an 11q child? please i need to contact...
Hind Almarzouqi
hind.almarzouqi@...
Oct 2, 2009 2:06 am
901
Hi. I would like to add pictures and stories about my son Leon. I have already sent you a text and you can use pictures from my blog www.verarubicon.com Vera ...
Erin, The website looks awesome!!! I'm so glad you put up all those articles. Bravo! and Thank You!! Heather Wainwright mom to Joshua [age 7, typically...
Good luck picking out which pictures to place on the website ~smiles~ Thanks for sharing Vera, I really enjoyed looking at your blog. Adorable little boy you...
Saw it this morning Think it is great. Off subject . I have a young couple over at Mmephis right now.He is likeo ne of my own kids. She is 28 weeks along with...
My dd (interstitial deletion)who is 12 has not slept a full night in years. She falls asleep fine, then awakes and has to be returned to bed a few times a...
When Grace went threw this we used Benadryl.Her favorite thing was to wake us up at 3Am to loud music. We are usuing herbal stuff from Native Remedies...
I checked real quick and yes they have somethign for kids. They are a little exspensive but i found if I find something that works I don't care how much it...
Great news! I just got a contract signed with a hotel for our 2010 conference. It will be held July 7-11, 2010 in San Diego at the Courtyard by Marriott San...
I would love to help with fundraising. I sell AVON and work with a great Jewelry Company if we can work something out. From: linzee_carroll Sent: Friday,...
I will help, but we are not sure if we will be able to attend the conference. We are doing one family vacation next summer and don't know if we will be able to...
Gretchenwarren@...
Nov 2, 2009 2:27 am
913
Carolyn is going to a residential camp out of state during that time frame so she is not able to come. WE are very disappointed as we had planned to come. I am...
Syretz Family
syretz@...
Nov 5, 2009 12:00 pm
914
Stell, I'm so sorry you guys won't be able to make it. We moved it to July because for the past 3 conferences we have had so many families request July...
We are thinking about going to this conference, but we need some more information. Is there a website for this or something simular?? We need something to...
Vera, We would love to have you come! We are compiling the information, registration forms, etc. now and they will be posted on our website at www.11qusa.org...
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