Henley Thomas

First post: Aug 20, 2010 Latest post: Feb 27, 2023
Henley received her first diagnosis of a Chiari (Key-are-ee ) Malformation (http://www.conquerchiari.org/) in August of 2010. She was diagnosed in December 2011 with a rare genetic disorder called 16p11.2. We are part of the research that Simons VIP Connect (https://simonsvipconnect.org/) is funding to know more about this genetic disorder. In January of 2012 Henley underwent brain surgery to help alleviate the symptoms she was having due to the Chiari putting pressure on her brain stem. We are on a constant journey to manage symptoms as Chiari can be a moving target. We have consolidated blog posts with this site to piece together the enitre story from the original diagnosis in August of 2010. Thank you in advance for your prayers as we walk this journey.

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