Gavin Garrison Tierney is 12 years old. He lives with his mother and sister in Silverlake, Washington. Gavin has Joubert Syndrome, a rare recessive genetic disorder, and requires constant 24/7 care.

There are about 350 diagnosed cases of Joubert Syndrome in the United States. Of those 350 diagnosed, there are only 13 cases that have been confirmed through extensive genetic testing. Gavin is one of those 13.

One issue with diagnosing Joubert Syndrome is that it can vary in severity, with one end of the spectrum being only mildly developmentally delayed while the other with severe mental and physical disabilities. Gavin lies somewhere in the middle of that spectrum. 

Gavin's daily life includes multiple therapies, homebound schooling, and numerous doctor appointments. His mother and two sisters are his support system. On top of having Joubert Syndrome, Gavin also has several other health complications and disorders. These include hypotonia, which is low or no muscle tone, ataxia, which is low or no muscle control, strabismus of the eyes, sleep apnea, and several others. 

Joubert Syndrome affects many things for Gavin, like his ability to walk and talk, but what  it does not have control over is his jubilant personality and zest for life. 

This story is an ongoing project, I intend to follow Gavin through his coming teen years to capture as much of his life as possible.