Carter Kenly was born on July 30, 2015, and diagnosed at 5 days old with Joubert Syndrome, which is a rare genetic disorder affecting less than 1,000 known cases in the entire world and is characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing patterns and intellectual disability. Individuals with JS often have retinal, kidney or liver diseases requiring additional medical intervention.
Carter’s parents, Jessica Savage and Dan Kenly of Gorham, are always on the road back and forth to Boston Children’s Hospital. Carter has occupational therapy and vision therapy every week. According to the family, the costs associated with a child with JS are astronomical.
There is a conference being held in Phoenix, Ariz., in July of this year that Carter and his parents will be attending. They will have the opportunity to meet other families that are affected with this diagnosis and have the opportunity to meet with doctors that specialize in this syndrome so they can continue to learn more about JS.