Eventually, genetic testing confirmed a diagnosis for Tyler: a complex neurological disease known as dystonia.
Dystonia causes involuntary muscle spasms that twist the body. Genetic forms of the disease generally begin in childhood and worsen throughout adolescence.
Tyler’s dystonia is caused by an inherited DNA mutation, and is known as DYT1 dystonia. Tyler has grown into an incredible young man, but at 16, involuntary dystonic movements make it challenging for him to walk, eat or even to speak. His sister, Samantha, has been diagnosed with the disease as well. Their younger brother is at risk.