Moorestown teen with facial birth defect: One of the girls

In the music room at William Allen Middle School in Moorestown, orchestra practice is under way. In a far-right row, three eighth-grade girls sit huddled over one music stand, intent on instructions from their teacher.

Dressed in sweater, jeans, and sneakers - the middle-school winter uniform - 13-year-old Kennedy Hubbard, silky long locks held by a headband, plays her violin with vigor. At this moment, she's just another aspiring musician.

But Kennedy's appearance is markedly different. A large mass - in medical terms, a lymphatic venous malformation - covers her lower face and neck. It's impossible to miss, yet it's clearly a nonissue for Kennedy and her classmates.

"Nobody makes a big deal about it," says Kennedy, who moves with ease through the school's hallways, classrooms, and eventually the contained chaos of dismissal time. "Curiosity is OK - cruelty is not."

When Kennedy entered kindergarten, nurses visited her classroom to explain to her classmates that what Kennedy had wasn't contagious, and that she was just like them in every other way. "By this time, most of our kids know Kennedy and we've never had an issue," said Allen Middle School vice principal Ray Kelly.

Between orchestra practice and civics class, Kennedy takes a detour to meet Karen Mercy, 47, her case manager and one of the several nurses on a rotating roster who accompany her in school all day, every day, but never inside the classroom.

The origins of Kennedy's rare condition are unknown. Such a malfunction of the lymphatic system occurs in about one in 12,000 births, but in varying degrees. In Kennedy's case, the condition is severe, and has required her to have a tracheostomy tube since infancy because of the location of the mass. Respiratory emergencies can arise at any time that can be potentially life-threatening.

On this day, it's just some routine suctioning in the school nurse's office, and a change of her humidivent, the device that encloses moisture in Kennedy's breathing apparatus.

"Kennedy amazes all of us with her spunk," says Mercy, who has been with her since she was 5 years old. "She'll fight through anything-she amazes me every single day that I'm with her."

In the kitchen of their Moorestown home, Leanne Hubbard, 41, tends to the excited family dachshund, Frankie, as Kennedy and two friends burst in from school.

Leanne and husband Jamie, 41, are command central in their daughter's care. They are conversant with highly technical medical terms and procedures, and with the daily challenge of seeking normalcy for Kennedy and her older sister, Casey, 21, who is graduating from Stockton College this year.

Their challenge began in 1996, when Leanne was newly pregnant, expecting a routine pregnancy. But an early ultrasound detected an "eraser-sized cyst" on the unborn baby, a cyst that kept growing through the remainder of the pregnancy. Not even doctors in a high-risk obstetrical practice at Jefferson Hospital could predict exactly what they would find at birth.

"We knew that this was pretty serious, and we didn't even know whether the baby would survive birth," recalls Jamie, who was not permitted to be with his wife when Kennedy was delivered by cesarean section on July 14, 1997.

The baby was immediately rushed to the hospital's neonatal intensive-care unit. Jamie caught only a glimpse of his new daughter. "I saw an infant whose face went right down to her mid-chest," he remembers. "She had to be intubated - there was a sense of emergency about everything - but from the start, I felt such intense love for her."

After a week in the hospital, the family was sent home with Kennedy, and an apnea monitor. "Nobody could tell us much of anything because this condition is so rare," recalls Leanne, who was numb with shock and fear.

At six months old, Kennedy was transferred from home to Nemours/Alfred I. duPont Hospital for Children in Wilmington, where she remained for eight months. Her mother stayed by her side, leaving only when Jamie relieved her some weekends so she could spend time with Casey. "We felt guilty wherever we were," Leanne remembers.

At duPont, there were two cardiac arrests, and a long struggle to stabilize Kennedy's airway. Back at home, there were trials with various experimental drugs, and several setbacks that landed Kennedy back in the hospital. When she was 6, a major facial surgery in Portland, Ore., the only place where the right specialist could be found, was not successful. Other less major surgeries have followed.

For the last 18 months, Kennedy has traveled every eight weeks to Children's Hospital Boston, one of the only places in the country equipped to deal with her condition, for ongoing treatments to shrink her tongue and reduce the size of the malformation in preparation for major surgery in summer 2012.

The financial burdens are overwhelming, but the family soldiers on, dealing with insurance issues that constantly arise. Jamie Hubbard, vice president of procurement at a local retail company, works as many hours as he can to keep up with the demands. "It hasn't been easy, but many people have it harder than we do," he says.

That outlook has motivated the family themselves to become champions of giving. Kennedy's early birthday parties were turned into fund-raisers for charities such as the Ronald McDonald House and Operation Smile, which treats children with facial deformities around the world. The family has raised more than $22,000 over the last decade to aid these causes that support children in need.

"When you're hit with something like this," Leanne says, "it makes you want to help others. Pay it forward."

Through it all, this family has remained resolute: "We don't pamper Kennedy or cater to her. We do encourage her to be independent and active," her father says. "And we're tremendously proud of Casey, who has helped her sister to have, and keep, a real sense of self-esteem."

Big sister Casey herself puts it simply: "Actually, I've been the one who's learned. Kennedy has taught me about empathy, and how not to judge."

On a recent afternoon, Kennedy and two of her BFFs, Caitlyn McBride and Rachel Fordham, both 13, rushed upstairs to clean up Kennedy's messy room, and then to dance with abandon to a Wii game. "We're pretty crazy together!" Kennedy says. "I'm not sure who's the craziest!"

Caitlyn and Rachel, classmates, neighbors, and loyalists, sometimes surround Kennedy like a loving honor guard.

"If anybody stares at Kennedy at the mall, we stare them back down!" says Caitlyn, a petite teen who is quiet in school, Kennedy reports, but is no shrinking violet when it comes to loyalty.

Rachel is just as committed. When Kennedy has had to miss school for her trips to Boston, Rachel sees to it that she gets assignments and updates. Kennedy is a straight-A student at the middle school.

Caitlyn and Rachel also have been part of a project that's now center stage in Kennedy's life. Determined to help others with problems similar to hers, she came up with a plan. Under the umbrella name "Kennedy's Cause," she designs and sells bracelets to raise funds for desperately needed research into vascular anomalies like her own.

The bracelets, which her family and friends make by hand, are banded in a variety of decorative ribbons, adorned with beads, and bear one sterling silver-stamped word: "Shine."

"I've always been taught that it doesn't matter what's on the outside," Kennedy says. "What matters is to let what's inside you shine through. And that's what I'm going to do in my life."

View additional photographs at www.philly.com/kennedyhubbard.

EndText

Proceeds from Kennedy Hubbard's Shine bracelets will support Kennedy's Cause through donations to the Vascular Anomalies clinic at Children's Hospital Boston.

Bracelets, which come in 10 colors and patterns, are $10.

To purchase bracelets, write to kennedyscause@ comcast.net. Checks made out to Kennedy's Cause can be mailed to Box 309, Moorestown, N.J. 08057.

EndText