Team Jaxon

Jaxon Clendenin is now five years old. When he was two, we discovered he was bilaterally hearing impaired.  From the audiologist,, it was determined Jaxon could hear us, but could not hear himself. Thus the delay in talking. Jaxon has been in speech since then. That was in May of 2013.  In August of 2013, Jaxon had an episode with is legs where he was dragging a leg and having difficulty walking. the episodes continued and  Jaxon was seen at Vanderbilt and the Mayo Clinic in Rochester, Minnesota. A MRI of Jaxon's brain indicated bilateral lesions of the globus pallidus, a part of the brain that deals with movement.  Neither facility could get a diagnosis but noted symptoms of dystonia and chorea. We researched Jaxon's  symptoms and asked his pediatrician to refer Jaxon to the Cincinnati Children's Hospital in the spring of 2014.  In October of 2014, David, D'Anna and Jaxon submitted their blood work for exome testing in an effort to get a diagnosis for Jaxon.  In July 2015, the doctors in Cincinnati advised us that Jaxon has ECHS-1 Deficiency.  As far as the doctors know, Jaxon is the only child in the United States with this diagnosis, and he was #18 in the world. As his disease has progressed, Jaxon has developed alternating hemiplegia of childhood.  Jaxon was first able to use a walker with his episodes, but now it is seldom possible because the episodes can be from his neck down.  Night before last, he could only move his eyes and his mouth. Most recently, Jaxon was admitted to Cincinnati Children's hospital for a 3 day EEG.  The test results continue to prove these episodes are not seizures. (Although Jaxon has experienced 2 seizures in the past). The neurologist has advised that the EEG was helpful because they captured one of his episodes, as well as the night time movements he is experiencing in his sleep.  As Jaxon's condition deteriorates, we are not sure how often we will be going to Cincinnati or the extent of the equipment he may need.  He will soon need a new push chair (combination of stroller and wheelchair).  We ask for your prayers for Jaxon, his older brother Carter, and David and D'Anna, his mom and dad.  There is not a support group they can join because he is the only child with this diagnosis in the United States, so they must rely on their family and friends to share this journey with Jaxon.