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Thread-Topic: Vein of Galen Malformation Awareness
From: <governor.haley@sc.lmhostediq.com>
To: <governor.haley@sc.lmhostediq.com>
Subject: Vein of Galen Malformation Awareness
Date: Sun, 23 Nov 2014 21:59:35 -0500
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<APP>CUSTOM
<PREFIX>Mrs.</PREFIX>
<FIRST>Elizabeth</FIRST>
<MIDDLE>Leanne</MIDDLE>
<LAST>Hendrix</LAST>
<SUFFIX></SUFFIX>
<TITLE></TITLE>
<ORGANIZATION></ORGANIZATION>
<ADDR1>2811 Hwy 6</ADDR1>
<ADDR2></ADDR2>
<CITY>Lexington</CITY>
<STATE>SC</STATE>
<ZIP>29073</ZIP>
<EMAIL>elizabethlhendrix@gmail.com</EMAIL>
<PHONE_H>803-727-2628</PHONE_H>
<PHONE_B></PHONE_B>
<ISSUE>HEAL</ISSUE>
<SUBJECT>Vein of Galen Malformation Awareness</SUBJECT>
<MSG>
Hello my name is Elizabeth Hendrix, I wanted to write to urge you to help myself along with another Mom raise awareness for a rare medical condition that has effected our children. Grayson and Lola were born with the Vein of Galen Malformation. It is a arterivenious malformation or brain AVM and it effects 1in a million children, only 250 cases world wide each year. Grayson and Lola are some blessed ones who were diagnosed correctly, but most babies are misdiagnosed and lose their lives because it is to late when they are correctly diagnosed. There is a lack of funding, and a lack of knowledge of this condition having Courtney and myself traveling to New York with our children to seek the medical care they need. Anytime we are at the Children's Hospital here in Columbia, South Carolina we are the teachers, as medical staff has never heard of the condition before and even admit to googling it for more information. We would like to raise awareness for this terrible condition so that one day more parents could be blessed like us and instead of having empty arms and planning their child's funeral, they will have full arms. Please help us raise awareness for this terrible condition. 
Thank you,
Elizabeth Hendrix
</MSG>

</APP>