We Live for Today

Joshua started second grade at Dodd Elementary School in Allentown this fall and signed up for a baseball team. That’s just a normal autumn for most 7-year-olds, but for Josh it’s something special. He has cystic fibrosis (CF) and was hospitalized for several months last year. Catching even a common cold will take him out of school and can be life-threatening.

“We’re always concerned about him getting sick, but we also try to let him live as normal a life as possible,” says his mother, Sandy Donchez. She and her husband, Alan, took in Josh two years ago as a foster child (their 52nd in the last 10 years), and are in the process of adopting him.

Josh dons a special vest four times a day to vibrate his chest and loosen mucous so he can cough and clear his lungs. He wears a mask when he’s around people who may have a cold or infection. Besides three hours of school a day, he goes to a rehabilitation hospital twice a week. He needs occupational and speech therapy, and also physical therapy for a form of muscular dystrophy that affects his hands and feet. Treatment is difficult because the medication interferes with some of the medication he takes for CF.

“Some children with CF live moderately healthy lives, while others struggle constantly against infection. Josh’s case is more severe than many,” says Robert Miller, M.D., pediatric pulmonologist at Lehigh Valley Hospital and Health Network.

Miller has cared for Josh since he was born, but he’s just one of many doctors who care for the child at Lehigh Valley Hospital’s Pediatric Specialty Care Center. Josh sees pediatric gastroenterologist Naser Tolaymat, M.D., for his digestive problems and pediatric oncologist/hematologist Philip Monteleone, M.D, for a blood clotting disorder called von Willebrand’s disease. Pediatric surgeon Chris Chang, M.D., has performed bronchoscopies (lung exams) and put in a feeding tube that helps Josh get the nutrients he needs.

“It can be a struggle, but Josh in some ways is just a regular boy. He plays baseball, bowls and is in good spirits most of the time,” Donchez says. “We try not to think about the future. Sometimes Josh asks if he’s dying, and I always tell him, ‘Not today.’”

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