Henley
2016 EMBRACING BRAVE North Texas Recipient
Henley is the sweetest 7 year old you may ever meet. Through all of her pain she is constantly smiling. Henley was diagnosed with Chiari Malformation at 9 months old and began having major neurological symptoms at 18 months old. She suffered a major round of seizures in October 2011 and was hospitalized for several days to undergo testing. In December 2011, she was diagnosed with an extremely rare genetic deletion called 16p11.2. At this time she is one of only about 500 people in the world to share this same diagnosis. She is currently enrolled in a research program to aid in learning more about this condition and how it will affect others. Henley began declining rapidly from age 20 months - 25 months and underwent brain surgery in January 2012 in an attempt to relieve her symptoms. Most of the most serious symptoms resolved following the surgery.
Henley was diagnosed with Ehlers Danlos Syndrome in 2013 and learned that she had severe muscle tone issues, joint laxity, and chronic pain in her arms and legs due to this new diagnosis. She began horse therapy to increase her strength in August of 2015 and has enjoyed having a different type of physical therapy. She will also begin several more therapies in the spring of 2017.
In August of 2016, family, friends, teachers, and therapist all started noticing some of the previous neurological symptoms returning as well as some new symptoms that had never seen before in Henley. Henley is now dealing with pain on a daily basis. She has numbness in her limbs, pain in her legs that cause her problems walking. She has frequent headaches, major speech concerns and motor planning issues. She also has begun having some difficulty swallowing. Because of these new symptoms and the complication of her co-morbidities, the family has decided it necessary to seek out a new neurosurgeon who specializes in Chiari and Ehlers Danlos Syndrome.
They will be traveling to New York City during December where they have an appointment with one of the top Pediatric Neurosurgeons that specializes in her condition on December 15, 2016. Henley will likely need a second and much more serious brain surgery in the coming months to address these neurological changes.
The Thomas Family will be using the proceeds to help with travel expenses for their trip to NYC in December and for Henley to be able to do something magical in New York City at Christmas time. -2016