Spina Bifida

Start with the legs: From the knees down, they move like pendulums, slowly swinging in loose ovals as Dennis Dadak ambles through the school's corridors, moving on arm locomotion, his calves almost independent of his thighs. Then one is drawn to the 10-year-old's face: The mahogany-hued thatch of hair, the broad cheekbones, eyes brown and big as chestnuts, and underpinning it all a smile like a familiar slap on the back. The smile lurks there, under the boy's other features, sometimes on the edge of deviousness, more often testing the waters of a stranger's friendliness.

Edward B. Charney, 48, of Cherry Hill, a dedicated professor of pediatrics at Children's Hospital of Philadelphia who was widely recognized for his work with children with spina bifida, died of cancer Sunday at the Hospital of the University of Pennsylvania. "His interest in helping children with these chronic disabilities was special," said William Schwartz, associate chairman of the department of pediatrics at CHOP. "He'd take care of patients from the projects with as much enthusiasm as a child from some fancy family.

Children who received fetal surgery to correct the most severe form of spina bifida were far more likely to walk as toddlers than those who had surgery after birth, concluded a new study led by researchers at the Children's Hospital of Philadelphia. The seven-year study confirmed some of the highest hopes of believers in the procedure, once thought to be speculative. It also raises new questions, including how to improve results while lessening risks for the mother and baby.

Pioneering surgery to fix spina bifida long before a baby is born is proving to have benefits, but the risks and limits of the operation remain considerable and controversial. Two new studies conducted by doctors at the Children's Hospital of Philadelphia and Vanderbilt University Medical Center concluded that surgery in the womb can improve potentially devastating brain malformations that usually cause hydrocephalus, or "water on the brain. " Many babies who underwent the surgery were spared the need for a lifelong shunt to drain the fluid.

Nearly five years after the first fetal surgeries to repair spina bifida, it is clear that the daring operation has significant benefits but does not spare babies from handicaps caused by the birth defect. The latest data, based on the first 39 surgeries performed at Children's Hospital of Philadelphia, were presented yesterday in New Orleans at the annual meeting of the Society for Maternal-Fetal Medicine. Mark Johnson, director of obstetrical services for Children's division of fetal surgery, reported that surgery in the womb consistently corrected a brain malformation that causes hydrocephalus, or "water on the brain.

For the first time, scientists have implanted a human organ, the bladder, in seven children after using their own cells to grow the organs in a lab in the first clinical trial of its kind, according to a study published in the Lancet medical journal. The children, ages 4 to 19, were born with defective bladders because of spina bifida and received replacement bladders between 1999 and 2001 at Children's Hospital of Boston, part of Harvard Medical School. The technology, which holds promise for other organs, including the heart, kidney, pancreas and liver, was developed by pediatric urologist Anthony Atala and colleagues formerly of Boston Children's and now Wake Forest University Institute for Regenerative Medicine, according to the April 4 online edition of the Lancet, a British medical journal.

Tim Jones glided over the ice, circling and firing pucks off the sideboards at the Skate Zone in Voorhees. The 18-year-old from Mount Ephraim was waiting impatiently for the goal to be set up so he could begin his final practice before leaving for Turin, Italy, where he will compete in the Paralympics as a member of the 15-man United States sled hockey team. The Paralympics run from Friday to March 19. "I just want to perform to the best of my ability," Jones said in an interview not long ago. Jones plays right wing for the U.S. team, which won the gold medal in 2002 and is favored to win it again this year.

The reveille bugle shatters the early morning silence and an overnight camp in upper Montgomery County gradually comes to life. Campers sleeping in whitewashed wooden cabins get dressed and ready for a day filled with swimming, sports and crafts. The routine could describe almost any overnight camp. But this one, the Variety Club camp in Worcester, is special because half of its campers are in wheelchairs, disabled by spina bifida, cerebral palsy, muscular dystrophy and amputations from congenital cancers.

Beauty is in the eye of the beholder. And in the spirit and courage of the beheld. Tonight, the lines between handicapped and able-bodied will blur, and the audience will experience what it means to be physically challenged - and physically graceful. Professional dancers from the Philadelphia Civic Ballet Company will perform "The Spirit of Dance" with the Variety Camp dancers - seven girls and one boy with disabilities ranging from spina bifida to cerebral palsy. They are from the Variety Camp and Developmental Center in Worcester.

HIGH-TECH SCRIPTURE. Now comes the first computerized Bible. Developed by a Georgia State University official, it's a portable, battery-operated unit weighing about four pounds that comes with a 65-character keyboard, liquid crystal display and a 16K word processor. Computer Bibles International Inc. will put it on sale in February for an estimated $485. NEW MOTHERS' RX. Part-time work outside the home is the best prescription for a new mother's happiness. So say University of Wisconsin-Madison researchers, who found that such new mothers - and their husbands - have the least amounts of depression and anxiety.

CHICAGO - Dignitaries from the highest ranks of government grieved alongside ordinary citizens yesterday as the woman who served as Chicago's first lady for 22 years was remembered as an inspiration to cancer patients and a passionate woman who helped shape the identity of this tough, but sentimental city. Hundreds gathered inside one of Chicago's oldest churches for Maggie Daley's funeral Mass, while others stood outside, listening to the service over a loudspeaker. The wife of former Mayor Richard Daley died Thursday after a long fight with breast cancer.

Children who received fetal surgery to correct the most severe form of spina bifida were far more likely to walk as toddlers than those who had surgery after birth, concluded a new study led by researchers at the Children's Hospital of Philadelphia. The seven-year study confirmed some of the highest hopes of believers in the procedure, once thought to be speculative. It also raises new questions, including how to improve results while lessening risks for the mother and baby.

Gerard C. Benene, 64, a prizewinning Inquirer photographer and photo editor, died of kidney failure Wednesday, Dec. 15, at Vitas Hospice in Stratford. He had lived in Blackwood. Mr. Benene joined The Inquirer as a copy boy while in high school and then worked in the photo lab. He was a staff photographer from 1972 to 1982, when he became a photo editor. He retired in 2005. In 1973, he won several spot-news awards for a jarring photo of a wounded police officer, shot by another policeman who injured a second officer before killing himself.

When he was 8, he was playing wheelchair basketball. By 10, he was the youngest competitor in the Marine Corps Marathon, riding alongside his dad, so he wouldn't get bumped. But that took a different kind of courage. Last week Kevin Smiley spent several days procrastinating before he showed up in Center City with his sign of the times. He faced the morning rush at 16th and Market in a shirt and tie, a giant placard resting on the arms of his hand-pushed chair: His first day, Monday, the aspiring sportswriter kept his sign and his chin up for three hours, gave away six or seven resumés, and left feeling as if he'd proven something to himself.

Jonathan Lucks, 25, of Malvern, a research assistant, died of blood clots Feb. 27 at George Washington University Hospital in Washington. Mr. Lucks was born with spina bifida, which left his spinal cord incompletely developed. His legs were paralyzed, and he moved with the use of heavy braces and crutches. He rarely used a wheelchair, said his mother, Mary. He preferred to be treated like everyone else, even if it meant pushing himself up steps with a heavy backpack, she said.

Kaitlyn Willard always envisioned going somewhere with her athletic prowess. The Upper Darby High senior has spina bifida. It is a birth defect, depending on the type, that affects the development of the spinal cord and results in some degree of paralysis. Even with her condition, Willard is having her dream fulfilled. Willard will attend the University of Alabama on a partial athletic scholarship in September to play for the Crimson Tide's women's wheelchair basketball team. She's scheduled to sign her scholarship in February for a basketball scholarship, which covers 5 years.

Tengion Inc., an East Norriton start-up developing regenerated human organs, said yesterday that it had raised $33 million from private-equity investors. The company earlier had raised $89 million in venture capital. Tengion's first product is a replacement human bladder constructed from a patient's own cells. The replacement bladders are now being evaluated in two midstage Phase 2 trials in 10 children with defective bladders attributed to spina bifida and in 10 adults with spinal-cord injury.

Lincoln University track standout Ashley Parker and Jimmy Rollins have something in common this week. They share space in Sports Illustrated. While Rollins, the Phillies' National League MVP candidate, is on the cover, Parker is cited in the "Faces in the Crowd" feature after being named one of nine finalists for the NCAA Woman of the Year Award. "Being in Sports Illustrated is overwhelming," Parker said. "I know a lot of great athletes have been part of the magazine. It is just great to be among the great athletes who've been in Sports Illustrated.

Last Thursday, 44 sixth graders at Villa Maria Academy Lower School in Malvern swam as many laps as they could to send Rebecca O'Connell, a 12-year-old who uses a wheelchair, to swim with dolphins in Florida. The sixth-grade class is part of the Fairy Godsisters program, which matches a child with a serious illness or physical disability to students in a school grade. The students raise money to grant a wish to the child in need. Along the way, students build a relationship with the child that will teach lessons in compassion and empathy, said Suzanne Young, director of development at the Sunshine Foundation.

All Kaitlyn Willard wants to do is compete and count. The Upper Darby High School junior is a varsity letter-winner on the Royals' track team. She also was born with spina bifida, a birth defect that affects the development of the spinal cord and results in some degree of paralysis. Willard is paralyzed from the knees down. That hasn't deterred her commitment and her determination to participate on her track team and have her points count like other athletes. So Upper Darby High School, on behalf of Willard, 17, petitioned the Pennsylvania Interscholastic Athletic Association in December to establish a wheelchair division and for her to be eligible to score points for the Upper Darby girls track team this spring.