The Trials of Parker Robb
A teenager emerges from the 'bubble' of a terrifying disease.
It was the summer of 2009, and Parker Robb and his father, Neil, were biking along winding country roads in upper Montgomery County. They already had gone 10 miles, and looming ahead was Sugarloaf Mountain in Dickerson. Parker was ready to give up and turn around, but his father urged him on, telling him it wasn’t much farther to the top.
Of course, Parker notes wryly, “he lied.”
Even so, the Winston Churchill High School student made it up the mountain, then down again, completing the 25-mile round trip to their home in Boyds. What would have been a satisfying accomplishment for almost anyone became a milestone for the teenager.
Just a few years earlier, Parker would have been too weak to climb onto a bike, let alone climb a mountain. Born with severe combined immunodeficiency (SCID), he endured lengthy hospitalizations, years of grueling and sometimes experimental treatments and three cardiopulmonary arrests from which he had to be resuscitated. A rare and potentially fatal genetic disease in which the white blood cells that normally fight infection don’t function properly, SCID is diagnosed in anywhere from 40 to 100 babies out of the more than 4 million born in the United States each year, according to the Immune Deficiency Foundation in Towson. Without treatment, individuals with SCID are constantly at risk from infection.
The disease was publicized in a 1976 television movie, The Boy in the Plastic Bubble, with John Travolta. David Vetter, the boy who inspired the movie, died at age 12. Parker is flourishing at 18.
When he was born at Shady Grove Hospital in Rockville in May 1992, Parker Robb seemed perfectly healthy. Soon, though, he began suffering from respiratory illnesses. And on New Year’s Eve that year, his parents became so frightened by his struggle to breathe that they rushed him from their home, then in Washington’s Palisades neighborhood, to the emergency room at Georgetown University Medical Center.
There, Dr. Charlotte Barbey-Morel, chief of the hospital’s division of pediatric infectious diseases, diagnosed pneumocystic pneumonia, which is typically found in patients with suppressed immune systems and highly unusual in an infant. Parker remained hospitalized for two weeks before Barbey-Morel diagnosed SCID as the underlying cause and transferred him by ambulance to Duke University Hospital in Durham, N.C., where leading researchers were studying the disease at the time.
Parker’s mother, Allison Mogus, now 38 and a government contractor living in Leesburg, Va., remained at her son’s side at Duke for seven months. His father, Neil Robb, 55, a Bethesda native who owns a home improvement company in Germantown, continued to work in Maryland during the week and visited on weekends. Parker was kept in a special wing of the hospital for immuno-compromised children with its own air source and “bubble” rooms that required visitors to don protective clothing before seeing patients.
Concerned that he would feel too isolated, Allison and Neil convinced the staff to let them take their son—dressed in a tiny paper gown, face mask, gloves and booties—out of his room at night, when fewer people were in the building. He celebrated his first birthday there. It’s also where he learned to walk.
Parker underwent four separate transplants at Duke, one a year until he was 4, using bone marrow donated by each of his parents. All four transplants failed. What doctors didn’t know at the time was that Parker had a variant of SCID, and that 10 percent to 15 percent of his immune response still functioned. That was enough to attack the donated cells and doom the procedures.
Doctors at Duke urged the family not to be discouraged. Intensive research was underway, and if they could keep Parker healthy long enough, a new procedure could potentially cure him, they said.
So the couple waited. Every two weeks a nurse came to their home to provide four-hour intravenous infusions of immunoglobulin to boost the toddler’s immune system. Parker would simply hold out his arm and wait for the needle without a fuss, his father recalls. It was a routine that continued for years.
From early on, neither Neil nor Allison wanted Parker to live in a bubble.
“We weighed the pros and cons to give him the best life possible,” Allison says. “Social interaction is a huge part of growing up, and we had to consider the whole picture. “We decided we wanted him to have a normal life. It was a very hard decision,” she says. “I was terrified every minute.”
Parker started preschool at age 3. At 5, he entered public school. Some other parents with SCID kids thought Parker’s parents were crazy.
“We were protective without going overboard,” Neil says. The couple would alert the school about their son’s condition every year, and whenever an illness made the rounds, the staff would contact them so Parker could stay home. He attended school about 60 percent of the time, his father says, and by the end of the school year he was usually so worn out that he would remain at home, finishing schoolwork that was brought to him by teachers.
Kids sometimes would approach Parker at school and ask what was wrong with him. He was smaller than his classmates, with thinning hair. At 10, he was the size of a 5-year-old. Nonetheless, he remembers being puzzled by the question. “I’m fine,” he would tell the other children. And in a way, he was.
“I was always amazed at how he could blend in and totally ignore the kids’ stares,” Neil says.
Learning that his disease was linked to a defective X chromosome found in Allison’s family, the couple decided not to have any more children, and divorced when Parker was about 4. Allison says the marriage would have ended even if their son had been healthy. Both have since remarried. Parker lives primarily with his father, and stays with his mother on weekends, during the summer and on holidays.
By the time he was 12, Parker’s health had begun to decline. He stopped growing, and the number of infections increased. “He had one complication after another—just about any infection you can think of,” Barbey-Morel recalls.
At the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH) in Bethesda, Parker became the first older child in the U.S. with X-linked SCID to undergo gene therapy. To this point, only infants had been treated, and with varying degrees of success. Stem cells from his bone marrow were collected and exposed to a virus with the corrected gene, then reintroduced into his body via an intravenous infusion. The experimental procedure failed, however, to correct his immune system.
He missed much of middle school, keeping up with schoolwork at home and in the hospital with the help of teachers. Always undersized, Parker was just 4 feet 2 inches tall in the summer of 2007, the year he turned 15. His body was decreasingly able to absorb nutrients, and his weight dropped precipitously to 45 pounds.
That year, Parker contracted three different major viral infections. “We were really worried about him,” says Dr. Harry Malech, chief of the genetic immunotherapy section of NIAID. Malech and his staff suggested transplanting healthy, blood-forming stem cells from an unrelated donor’s umbilical cord blood with the hope that these new cells would generate a normal immune response. But Parker first would have to undergo both chemotherapy and full-body radiation to reduce his own remaining bone marrow and make room for the new cells.
“We had been avoiding chemo because it might kill him, since he was so weakened at that stage,” Allison says. “[But] it was the only option left to us. We had to weigh the risk of killing him with chemo versus him not surviving.
“It was Parker who decided to go ahead and do it,” she says.
Neil recalls watching as the medical staff at NIH took his son “as close to death as they can [with the chemotherapy], and then brought him back.” At one point, Parker went into cardiopulmonary arrest because of an allergic reaction to medication. “You’re helpless and just have to watch them do their thing with a crash cart,” Neil says.
After the August 2007 transplant—the first successful cord blood transplant at NIH—Parker spent four months at the NIH Clinical Center and the remainder of what would have been his sophomore year of high school recuperating at home. During his long recovery, he decided he needed a hobby. Inspired by an aunt who is a professional photographer, he asked his father for a camera. “My dad wanted to make sure I was serious, so I read 11 books on photography and taught myself,” Parker says.
He got the camera, and when he returned to high school in the fall of 2008, he enrolled in a yearlong Journalism I class. “Normally, we don’t give first-semester J-I students the responsibility to be in print,” says Kelly Knarr, Parker’s journalism teacher at Churchill High in Potomac. “But we decided to assign Parker to a girls’ varsity soccer game. He showed up early, introduced himself to the coaches on both sides and took about 300 photographs with pages of notes. I was blown away by it.”