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Thread-Topic: Only child in SC suffering from rare neuromuscular disease
From: <governor.haley@sc.lmhostediq.com>
To: <governor.haley@sc.lmhostediq.com>
Subject: Only child in SC suffering from rare neuromuscular disease
Date: Tue, 26 Aug 2014 12:44:48 -0400
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<APP>CUSTOM
<PREFIX>Mrs</PREFIX>
<FIRST>Ashley</FIRST>
<MIDDLE>E</MIDDLE>
<LAST>Henson</LAST>
<SUFFIX></SUFFIX>
<TITLE></TITLE>
<ORGANIZATION></ORGANIZATION>
<ADDR1>131 Country Place Dr</ADDR1>
<ADDR2></ADDR2>
<CITY>Inman</CITY>
<STATE>SC</STATE>
<ZIP>29349</ZIP>
<EMAIL>ahenson052811@gmail.com</EMAIL>
<PHONE_H>864-384-6236</PHONE_H>
<PHONE_B></PHONE_B>
<ISSUE>LETT</ISSUE>
<SUBJECT>Only child in SC suffering from rare neuromuscular disease</SUBJECT>
<MSG>
Hi Nikki, my husband and I would like to reach out to you to share the story of our 9 month old son. He has a genetics disorder called X-Linked Myotubular Myopathy. It's a rare neuromuscular disease that primarily affects the skeletal muscles causing weakness and hypotonia. Jaxon breaths with the help of a ventilator and feeds through a feeding tube. According to the Allen Beggs research study that we have Jaxon enrolled in, he is the only child in SC with this disease. I'm not writing to you for sympathy or money, but just simply in hopes of raising awareness for our MTM community. We have a facebook page set up for Jaxon www.facebook.com/jaxonsfight as well as a gofundme page www.gofundme.com/d0252c. You can go to either one of them so see updates on Jaxon. Jaxon is also registered to be the March of Dimes ambassador for Spartanburg in 2015. Please take the time to allow us to share Jaxon's story with you. Look forward to talking to you soon!

Sincerely,
The Henson Family
</MSG>

</APP>