Graduating With Honor : Phay Kam Overcame Physical Obstacles to Accomplish Longed-For Goal

By many accounts, Cambodian immigrant Phay Kam is the toughest guy on campus.

Despite a devastating disease that has rendered him immobile, confined to a wheelchair and dependent on a ventilator for every breath, Kam has devoted long years of painstaking work toward the fulfillment of his dream.

On Wednesday, at the age of 23, he will achieve that goal by graduating from Monroe High School.

“Phay is a very motivated young man,” said Mary Jo Johnson, a program specialist for the Los Angeles Unified School District. “It is so important to him that he graduate.”

The oldest in his class, Phay (pronounced Pie) Kam will be among 600 seniors to receive a diploma in graduation ceremonies. He will ascend the ramp in a motorized wheelchair he operates with his mouth.

His parents, three younger brothers, teachers and a small army of nurses and assistants are all expected to be there to applaud his victory.

Kam has the most devastating form of muscular dystrophy, Duchenne. Most victims of the disease die by their mid-20s.

“His graduation from high school is an inspirational accomplishment,” said Jim Brown, a spokesman for the Muscular Dystrophy Assn. in Tucson.

Kam, who is fluent in English, Thai and Lao, has no plans to stop. The Northridge resident, who communicates with smiles and short phrases between breaths on the ventilator attached to the back of his wheelchair, says he is looking toward college. He particularly likes science, which he calls “real neat.”

He hopes to further pursue his studies by learning to use a specially equipped computer that he can operate with his mouth.

More than 250,000 Americans suffer from muscular dystrophy, an inherited genetic disorder that progressively depletes muscular strength. Duchenne is the most common and severe childhood form of the disease, according to the MDA.

Kam, who came to the United States at age 9 with his parents, was officially found to have the disease a year later in 1982 when he first visited an MDA clinic. His three younger brothers, who live in Long Beach with their parents, do not have the disease, officials said.

Kam was given a wheelchair and a support jacket by the MDA in the first year, Brown said, and other medical services and orthopedic equipment as the disease progressed.

By the time he was 12, Kam’s strength had degenerated to the point that he needed to be on a ventilator and have 24-hour nursing assistance. While under the care of Rancho Los Amigos Medical Center in Downey, he continued his education at local schools, completing educational requirements through the 10th grade level, Los Angeles district officials said.

After overcoming a bout with pneumonia--a common and dangerous complication of the disease--Kam’s condition stabilized in 1992 and doctors recommended he be discharged from Rancho Los Amigos. His father, Locut Kam, arranged for his son to be placed in one of the four group care homes operated in Northridge by a private firm, New Start Homes.

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The homes have six residents each, plus staff, and strive to provide a family atmosphere. Almost all the residents in the homes are dependent on ventilators and require 24-hour nursing care, said Deborah Hatch, director of nursing for New Start.

The group homes, established 11 years ago, are designed to train clients “to be as independent as possible,” Hatch said. “We try to help them understand that their life is not over.”

Hatch said the medical prognosis for Kam is good. “He is medically stable and very bright,” she said. “There is no reason why he can’t go on to college and complete whatever studies he chooses.

“He’s pretty terrific. He works hard and has a lot of heart.”

Kam is accompanied daily to school by a full-time health care assistant, Barbara Burnett, who has been assigned to him by the school district for the last two years.

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Burnett meets Kam at his home before 7 a.m., rides with him on the bus to school and stays with him until he returns home about 1 p.m. She not only monitors his equipment and helps with his personal care, but also takes notes in his four classes and helps him complete tests and assignments.

In his special education English class last week, teacher Sandy Gephart asked each of the 10 students, all of whom have learning or physical disabilities, to list five of their best attributes. Kam listed his abilities to converse and laugh with friends. Then, with a twinkle in his eye, added his knack for sleeping.

“He loves school and the kids think he’s great,” Burnett said.

Kam also knows what he likes. Mention egg rolls, particularly those made by his mother, or noodles and Tabasco sauce, and a wide grin dances across his face. He drinks cans of Ensure, a diet supplement, for breakfast and during nutrition breaks at school--strawberry is his favorite flavor. But when he returns home after school, he considers noodles or other Chinese specialties epicurean delights, according to his nurses and housekeeper.

Kam said he is particularly proud that his family, nurses and friends will attend his graduation. He told Burnett that he would like to leave a time capsule for his family, with pictures and expressions of thanks for their support, “so that someday,” Burnett said, “they would know how much he loves them.”