Parenting a child with Joubert syndrome is frequently a series of unexpected events. Transitioning from adolescence into adulthood is no exception. How long can my child stay in school? What will they do after high school? Who will manage their finances or medical care? The questions are endless. The decision to pursue guardianship or power of attorney is a personal one that often stirs up a whirlwind of emotions. Will my child live independently? Who will take care of them if something happens to me? What other special needs will my child have as they become an adult?
We also recognize that being a young person or adult with JS can be frightening at times. Will I get into college or vocational school? Will I be able to find a job? Will I always live with my parents? Will the doctor give me good news or will I develop one of the known medical complications of JS? Anxiety and depression are often present. We often rely on our parents or families to help us with daily chores, finances, and transportation while desperately wanting to be independent.
Our JS family includes young men and women who are truly amazing. In an attempt to display some of the many faces of JS, we have gathered profiles of these men and women. They have shared their interests, successes, and challenges in hopes to continue to inspire other youth JS. Please read more about them on the Profiles of Adults with JS page.