Rarely in life do the personal and professional become the bittersweet blend that Stan Nelson and Carrie Miceli experience every day.
At work, the medical researchers at UCLA painstakingly delve into the genetic underpinnings of Duchenne muscular dystrophy, the most common of childhood's lethal DNA-linked diseases.
Miceli and Nelson don't dream of a cure for their youngest son. Heavily schooled in objectivity and neutrality, they are able to tolerate the often-creeping pace of science and yet savor its progress.
"We have a sweet, wonderful boy who is delighted with life," said Nelson, a former pediatric oncologist, now a genomics researcher. "One could spend one's life racing against the clock — and making that the focus of family life and of research life. I don't spend a lot of time dwelling on that."
The couple's goals are much more immediate. This year, Nelson and Miceli will open the doors of a Duchenne muscular dystrophy clinic at UCLA. It will serve approximately 350 boys — many of whom now travel out of state for treatment — offering specialized cardiac and neurological care as well as physical therapy and access to clinical trials.
The disease, which mainly affects boys, usually leads to death from lung disorders. But specialized care can add several years of life expectancy to the 25 years or so that is typical, doctors say.
"We're creating an infrastructure at UCLA that will live on in the future," Nelson said. "That's rewarding."
"It's all coming together in the last five years," said Miceli, an immunologist who studies the function of T cells, white cells that are crucial to immune system function. "I have no doubt that the course of the disease will be different for this generation of boys. We don't know how different. But we just have to go forward."
In the family room of their Los Angeles home on a weekday afternoon, Dylan is watching cartoons and eating a slice of cantaloupe. Both he and Calvin are creative, and their paintings, sketches and poems fill the home. Dylan's repertoire includes a poem on a wall near the kitchen titled "In My Heart."
In my heart, I feel I can fly.
A whirlwind of boy energy, he soon abandons the cartoons to take on his mom in a backyard game of handball, his favorite sport. Stocky, with blue eyes and a mop of dark hair, he smacks the ball against an ever-expanding smudge on the stucco exterior. Already, he moves with a hint of the gait problems that boys with the disease develop as they approach their teen years.
A power scooter on which Calvin has painted Star Wars characters sits just inside the front door, available should Dylan need to conserve his strength. But Dylan ignores the scooter today. He bounces the ball to his mother.
"Whoa, Mom! How are you getting so good?" Dylan says, keeping up a steady monologue.
"I may have a sleepover this weekend. OK?"
"Mom, why can't I take a handball class?"
A personal fight against a lethal childhood illness
Two medical researchers at UCLA are opening a clinic this year for Duchenne muscular dystrophy, a disease that affects 1 in every 3,500 boys – including the couple's 9-year-old son Dylan.
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