STANFORD, Calif--
 
 
 
 
 
 
 
 
 
Event, 6/13/08, 12n-1pm
EB bikers meet EB kids
CCSR Courtyard
269 Campus Dr., Stanford, CA (map)
(B-roll of Garrett in an EB clinic visit can be seen here)
(Media can also attend EB clinic prior to 12n event)
 
“He told me he’s trying to stay in shape, just in case he gets that call from the NBA.”
 
Mom Lorraine Spaulding of Newman, CA, is sharing the dreams of her son, 11-year-old Garrett, a Boston Celtics freak who’s thrilled the Green Machine may become NBA champs. But before lacing ‘em up, kids like Garrett need a cure for EB (Epidermolysis Bullosa), an exceptionally painful genetic disease so rare that most doctors will never see it. “EB makes the skin pull apart and create blisters everywhere,” said Anna Bruckner, MD, chief of pediatric dermatology, “not just on Garrett’s skin, but in the respiratory and digestive system, too.” EB kids are missing a protein needed to anchor the inner and outer layers of skin together. Without this connection the layers slide freely past one another, creating a constant assault of blisters, infection and unbelievable pain. About one in 20,000 are born with EB, and the severely affected die young. Along the way, fingers and toes fuse from the scarring.
 
This means Lorraine cannot give Garrett a tight, loving squeeze or even throw him a basketball. The slightest friction is just too much. “Still, he’s a happy kid,” said Lorraine, despite the grueling, every-other-day change of gauze and bandages cocooning his body. It’s a remarkably elaborate, five-hour grind that involves Lorraine tenderly peeling and replacing the multiple dressings on Garrett’s legs, arms, neck, chest, waist and feet. A seemingly endless number of antibiotics, lubrications and ointments are required, though Garrett does dip in the hot tub while Lorraine preps and sanitizes new bandages. “When we finish, we’re either worn out or raring to go.” The mom of five is certainly proud of her fifth-grader, who gets tired walking and has to resort to a stroller. Still, they’ve come a long way from those first moments together. “I knew something was wrong when he was born. His cry wasn’t normal. It was a cry of extreme pain.” 
 
On Friday, Garrett has an appointment at the EB clinic at Packard Children’s, where Lorraine is coordinator. It’s California’s only EB clinic, a place where experts from pain management, gastroenterology, hematology and other disciplines team up on the medical problems caused by EB. "We also teach parents how to apply bandages and when to suspect infection," said Bruckner. "We provide nutritional support to help the kids get extra calories they need to help their skin heal. It's also important to diagnose and treat anemia early to avoid long-term dependence on blood transfusions."
 
Meanwhile, the search for a cure is underfunded. That’s why a passionate group of bike riders is pedaling 2600 miles to raise money for EB research. And they’re coming to Packard Children’s this Friday at 12n to meet with EB kids, their families, physicians and researchers during ebtrek08, a “Ride to Save Lives” that looks to raise $100K for research. “The kids are thrilled to be meeting the bikers,” said Lynn Anderson, president of the all-volunteer EB Medical Research Foundation in Piedmont, CA. It means a lot to Anderson. She lost both a son and daughter to EB.
 
The buzzword in research is gene therapy. Researchers like Alfred Lane, MD, are hopeful. “We are now preparing to go to the FDA for approval for a gene therapy trial, first in adults and then in kids,” said Lane, an internationally-known dermatologist. (Dr. Lane discusses this research and Garrett’s condition on YouTube.)
 
Garrett, wearing his ever-present Kevin Garnett jersey, looks forward to meeting the bikers Friday and asking how many of them share his love of the Celtics. “When I’m done with EB,” said Garrett, “I want to be on a basketball team.” And if that doesn’t work out? “Well, that’s OK,” said Garrett. “I’ll be a TV commentator instead.”
 
Links - ebtrek08 - www.ebkids.org - Alfred Lane, MD, discusses EB research
 
About Lucile Packard Children's Hospital
Ranked as one of the nation's best pediatric hospitals by U.S. News & World Report, Lucile Packard Children's Hospital at Stanford is a 272-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with the Stanford University School of Medicine, Packard Children's offers patients locally, regionally and nationally the full range of health care programs and services, from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit www.lpch.org.