Andrew Eveloff of Overland Park, Kan., is a busy and happy 8-year-old, who goes to public school, plays Nintendo, wrestles on the bed with his father, and regularly goes to physical, aquatic and horseback riding therapies.
That's a great deal more than was predicted for Andrew when he was born in 1992 with what was then thought to be spinal muscular atrophy and later turned out to be a congenital muscular dystrophy.
|Andrew with his service dog, Trey, and as a newborn (below)
Andrew's father, Scott Eveloff, a pulmonary and critical care physician, and mother, Ruth Eisen, a pediatrician, experienced some of the worst moments of their lives during their child's early years, a time that Scott chronicles eloquently in his book Both Sides of the White Coat.
Because of their experience, Scott eventually switched from pursuing a high-powered academic medical career in Rhode Island to a patient-centered private practice in Kansas.
Ruth stopped practicing medicine entirely, in part to take care of Andrew and in part because she no longer had the patience needed for well-child issues like teething and toilet training.
The couple began to revise their attitudes toward life and even toward science.
"We've been through so many inexplicable things," says Scott, recalling the dark night when he and Ruth decided not to reinsert Andrew's feeding tube, an event that was followed not by the predicted decline of the child but by his beginning to thrive. "You just have to live and let what happens happen."
He adds, "What has worked for Andrew has not been vectors with DNA, but an aquatic therapist who will think of things to do with him, a physiatrist [rehabilitation doctor] who will sit down with us.
"Playing Nintendo, Scott says, "is every bit as important to us as finding out about proteins."