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Last Updated: 7/16/2009

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Gender: Female
Status: Single
Age: 31
Sign: Virgo

City: MALVERN
State: Pennsylvania
Country: US
Signup Date: 6/23/2008
Thursday, September 25, 2008 

The Newborn Screening Unity Quilt
A Celebration of Rarity

Mission
The Newborn Screening Unity Quilt allows families to celebrate and share the lives of their children who were born with disorders detectable through newborn screening.  The NBS Unity Quilt celebrates the lives of all affected individuals, including those spared and lost. The mission of the NBS Unity Quilt is to create a visual testimony of the most compelling symbol of newborn screening - the children touched by it. ..:NAMESPACE PREFIX = O />

Display Schedule
The NBS Unity Quilt is a heartfelt tool in the fight for proper Newborn Screening.  If you would like the Quilt displayed in your community, please contact us as directed below.  The Quilt can be displayed across the United States in medical schools, hospitals, newborn screening laboratories, libraries, businesses, corporate offices and other forums touched by newborn screening.  Past displays and the upcoming display schedule are available for viewing.  

The NBS Unity Quilt panels will also be displayed in various locations each year during the month of September.  September has been declared as Newborn Screening Awareness Month.  

Photo Gallery
View the NBS Unity Quilt Photo Gallery.

Participating
Participation is open to all families with children--and to individuals--who have disorders detectable through newborn screening.  Learn how to participate in the NBS Unity Quilt project.

More Information

NBS Unity Quilt Information Guide
For more information about the Newborn Screening Unity Quilt project, or if you are interested in hosting a display, contact the NBS Unity Quilt Manager or call toll free 1-888-454-3383.

Please also take a moment to view the panels in our NBS Awareness Quilt Photo Gallery here on MySpace!

7:16 AM
 
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Too Many Kids

 
My grandmother is helping me make mine now!
 
Posted by Too Many Kids on Thursday, September 25, 2008 - 12:30 AM
[Reply to this] 
Pam

 
My name is Pamela Fernandez my son is 13months, at about 2 months our pediatrician asked us if we wanted to get the newborn test done. We did and a couple of weeks later they called us saying that the levels or argininemia came out high. We had a horrible couple of months from doctor to doctor trying to figure out what was wrong. After our pediatrician told us about this horrible disorder that would basically make our son retarded she sent us to a specialist. We suffered soooo much for almost 4 months. After many test done to my son they finally said he was not suffering from this disorder. 
I wanted to post my personal story so if anyone out there is told something like this, don't panic until you have talk to a specialist. This genetic disorder cannot be diagnosed by the new born screening alone, so if anyone out there thinks that just because the arginine levels are high that does not mean you have the disorder. My son is perfectly healthy and eats all the protein he wants so good luck and dont let your pediatrician scare you!
Good Luck
any questions my email is amuzemagazine@gmail.com


















 
Posted by Pam on Tuesday, October 27, 2009 - 10:30 PM
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