Anyone who has attended a lecture at a genetic syndrome support group conference knows that it is like an extremely high-stakes graduate-level class. Parents take notes and ask detailed questions about their children's condition and treatment: they want to know what to expect and what they can change, in a sort of Serenity Prayer accomplished with the help of the doctors and genetic counselors imparting information. One of the hallmarks of Noonan Syndrome is the great variability with which it affects children. Yet many parents of older kids were not given the benefit of this open-endedness when they began their transit through the medical system.

Several families shared their stories, evidencing further variation in their responses to receiving the diagnosis of a genetic condition, as well as the range of experiences they have had with health care practitioners. Yet there is a common element of surprise that all parents experience: the individuality of their child, present at that very first cry, the gift that was bestowed on their family.  Ironically, the more obstacles that cluster around a life, the more this individuality seems to stand out.  There is much we cannot control about our lives, but the flourish that we add to what we can control: that is style.  That Sophia is a dynamo of energy, Scott is studying graphic design, or that Mark Evan loves to make his stamp upon wood…this is their style. Science can never fully account for it, yet an individual's style of confronting the world is the motor that makes the rest of the person run. This energy is inseparable from health, and that is why it is so important for health care professionals to see affected individuals' style through Positive Exposure's photographs.