Family, friends recall encephalitis victim

Chanlan Lee stood onstage with a violin wedged under his chin. One hand flew over the fingerboard as the other guided a bow across the strings. The sound was mellow, yearning.

For one so young, the concentration was fierce. Chanlan was 7 when the video was filmed as he played Jules Massenet's "Meditation" from Thais, his signature piece of music.

It was one of his final performances.

At age 8, Chanlan died Dec. 19 after a three-week battle with viral encephalitis, the second such case on the Main Line in two years.

Though doctors at Children's Hospital of Philadelphia fought to save Chanlan, his life support was disconnected when it became clear he had lost cognitive function.

"It was the hardest thing," said Catherine Chan, 41, his mother. "He was the love of my life."

Chanlan, who at age 5 1/2 had been the youngest pupil to win a scholarship to the Nelly Berman School of Music in Haverford, was buried Dec. 26 with a tiny crystal violin.

The family and the school's nonprofit institute plan to hold a memorial concert at 7 p.m. Friday at the Haverford School's Centennial Hall; proceeds will go toward a scholarship for a violin student ages 6 to 10.

"I try to tell myself, even though he's not here, his spirit is around me," said Chan, of Villanova. "And I know he would be so happy if he knew what's going on."

Elena Berman, who taught piano to Chanlan at the school when he began his studies, described the boy as gifted, with a rare work ethic.

During a typical week, Chanlan took two hour-long violin lessons and chamber music lessons, and practiced. During breaks, he socialized.

"We loved seeing him come to the office, with his Chinese long braid in the back, and sit on the secretary's knee," Berman said.

He performed May 17 at the Kimmel Center, at summer music camp, and during a First Friday Main Line event Nov. 7.

"Chanlan Lee had such a joie de vivre about him as he played his violin on the trolley. His sweetness was contagious," said Carla Zambelli, publicist for the Nov. 7 event.

Chanlan was in the second-grade gifted program at Gladwyne Elementary School. His dream was to play like violinist Sarah Chang, the Philadelphia-born virtuoso who performs worldwide. They met by chance Nov. 25 at the Genuardi's market in St. Davids.

Earlier that day, Chanlan had been treated for strep throat, from which a high fever developed. The next day, the boy's parents took him to Bryn Mawr Hospital, where he experienced seizures.

Chanlan's condition was critical; he was transferred within hours to Children's Hospital.

"Every time when I close my eyes, I'm standing there and I can't help him," his mother said. "I still remember him reaching out to me: 'Mommy, Mommy.' "

Chanlan arrived at Children's in a coma, said pediatric epilepsy specialist Nicholas Abend, and never regained consciousness.

Viral encephalitis is an inflammation of the brain. In Chanlan's case, the virus attacked the heart, too, interfering with blood pressure.

"Unfortunately, we don't have adequate treatments to kill the virus," Abend said.

On Dec. 19, doctors told the family that Chanlan's brain was so damaged that there would be little hope for "any quality of life." "We decided to let him go," Chan said.

Chanlan was memorialized during a service at Holy Redeemer Church in Chinatown, and buried at Forest Hills Cemetery in Philadelphia.

Two years ago, viral encephalitis struck Ardmore executive Moira Shaughnessy, now 38. Doctors at Roxborough Memorial and Hahnemann University Hospitals saved her life. But she has memory loss and needs constant supervision.

"It's like having an Alzheimer's patient," said her sister Mary McGill.

Lawrence L. Livornese, who treated Shaughnessy, said symptoms in the old and young aren't well understood.

Abend said doctors at Children's have seen five cases as serious as Chanlan's in the last several years. Normally in such cases, about half the patients die and the other half are left cognitively disabled.

His death has left Chanlan's family shaken.

"To this day, I do not understand," Chan said. "There are times I ask myself, 'Did I not notice something?' I am so afraid for other children, and I don't want other parents to go through what I went through."

A memorial concert for Chanlan Lee is scheduled from 7 to 9 p.m. Friday in Centennial Hall, Haverford School, 450 W. Lancaster Ave., Haverford. Donations will be accepted for a scholarship fund. For more information, call 610-896-5105.

To view a video of Chanlan playing, visit http://go.philly.com/chanlan

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