Fourteen-year-old Evan White of Houston, like all FD victims throughout the world, lives each day in the shadow of this life-threatening disease. FD con­trols every aspect of this seventh grader's life. For Evan, the day begins at 5:00 a.m. He is given medication through a feeding tube directly into his stomach to help control his blood pressure. While mornings are the most difficult time, other challenges continue throughout the day. To maintain the extremely delicate balance of his small body's functions, Evan must take medication to control his digestion, anxiety, blood pressure and a variety of other functions most of us take for granted.

Evan's young life is extremely reg­ulated from hour to hour, to help prevent some - but not all - health care crises. These crises are life-threatening and lead to emergency medical treatment. Since FD is an unpredictable disease, life with children like Evan must be planned on a "what if" basis. Every contingency must be taken into account - and then some. For example, Evan's illness once required a plane to land unexpectedly. Evan's illness has made planning a moot point. You try to plan - then you hold your breath.

Evan's life is difficult, but that doesn't stop him from wanting to roller skate and play the guitar. He has many dreams he hasn't even talked about to his mother, Chava, father, Alien, sister Rachel, and nurse, Florencia. Through his battle with FD, people in Evan's life have learned that life is a joy and every moment is to be cherished. This young man exudes kindness and enthusiasm and makes no apologies for his limitations. He smiles, laughs and is interested in the world around him. He loves to go to school, loves baseball and loves his family and dog, Bingo, with all his heart. Evan never hesitates to lend a helping hand.