May 27, 1999

REMEMBERING A QUIET HERO

Usually it's an exaggeration to say someone is "one in a million." Not in the case of Bruce Bryer. Bruce was a remarkable young man whose unique genetic makeup had a profound effect on neuromuscular science and on medicine itself. He was also a hero.

Born in Spokane, Washington in November, 1966, Bruce was a frail infant with an enlarged head and a dangerous susceptibility to fevers, infections and stomach ailments. Bruce was put up for adoption and luckily was taken in by foster parents who loved him immediately and unconditionally, Robert and Laurene Dixon.

During one hospital crisis when Bruce was nine months old, a pediatrician told the Dixons that Bruce might not make it. "I bent over his crib to talk to him, and he tried to lift his arm to my face, but he was so weak, he just couldn't do it," recalled Laurene Dixon.

Bruce survived, but in time the Dixons would lose count of his many brushes with death. By age three, serious vision problems were added to his other symptoms. Eventually, it would be determined that Bruce was affected by three serious genetic illnesses, a degenerative eye disorder called retinitis pigmentosa, an immune system condition called chronic granulomatous disease, and Duchenne muscular dystrophy (DMD).

The Dixons vetoed any suggestion after this third and most devastating diagnosis that they might wish to relinquish Bruce to another foster family or an institution. He was part of the family.

Perhaps because he was raised in a loving environment, Bruce developed a warm, winning personality and a sense of humor that endeared him to everyone he knew including medical professionals at Spokane's Sacred Heart Hospital who came to know him from his frequent stays there. At the hospital, one doctor commented that he would make rounds to most kids' rooms to make them feel better, but he would come to see Bruce to make himself  feel better. Nurses would greet Bruce's visits with balloons, flowers and signs saying "We Love You, Bruce."

Most of all, those who remember Bruce recall his serene smile and remarkably uncomplaining nature in the face of the constant stream of health problems that plagued his existence.

University of Washington researchers learned of Bruce's rare and calamitous combination of genetic illnesses and suspected that they might result not from a gene defect but from a large missing segment of DNA on Bruce's X chromosome. Bruce willingly subjected himself to doctors' tests with the understanding that the information gleaned might one day prove useful in helping others.

"He went through a lot," Laurene recalled. "We couldn't believe how much blood they'd take from such a little boy." Researchers, in fact, were surprised that anyone with such a large piece missing from the X chromosome could still be alive.

Eventually, Bruce's genetic information would be sent on to Dr. Louis Kunkel, an MDA-funded researcher at Boston Children's Hospital, who compared it with DNA from other boys with DMD in the hope of finding clues to the location of the DMD gene.

Bruce started using a wheelchair as a result of his DMD. As a teenager, he enjoyed trips with his family to Disneyland and Yellowstone National Park. At campgrounds and hotels, Bruce, who didn't see himself as being different from any other kid, would take off in his wheelchair and make new friends.

He attended school as much as he could between medical emergencies, while accustoming himself to continual setbacks such as being told he could no longer eat solid food. Even as his loss of voluntary muscle became more and more pronounced, Bruce believed that a cure for DMD would be found and began to form plans for getting married, buying a sports car and moving to California.

Bruce possessed a spirit that allowed no possibility of giving up. Yet the reality of his physical health was another matter. On Christmas night in 1983, the family van was hit broadside by a car running a red light. Laurene Dixon saw the crash coming and turned in time to hold Bruce in his wheelchair. She and her husband were uninjured. For Bruce, the accident itself wasn't fatal, but the trauma was too much for his system to bear. Bruce died that night. He was 17.

In October, 1986, shortly before what would have been Bruce's twentieth birthday, MDA National Chairman Jerry Lewis stunned the medical community with the announcement that Kunkel's MDA-funded research team had found the exact location of the DMD gene. Within a year, further MDA-funded research revealed that the cause of the disease was the absence of a needed protein, dystrophin.

Both these discoveries were made possible in large part by Bruce's one-in-a-million DNA.

"We always knew there had to be a reason for his living so much longer than the doctors had predicted, and suffering so much," said Laurene of Bruce's troubled life and his willing contribution to DMD research. "I couldn't help but feel how proud he would have been to have helped like that."

Over the last decade, and building upon the DMD gene discovery, MDA-funded researchers have labored to develop gene therapy as a treatment method for DMD. Those who wish to help expedite this process can do so by making a gift to support MDA research.

MDA remains committed to finding ways to treat and defeat DMD. No cause can ever be closer to our hearts than the necessity of stopping this fatally progressive childhood disorder, the very disease that brought together a partnership of parents and doctors to establish MDA in the early 1950s.

For all who remember the 1986 gene discovery as a major turning point and the birth of new hope for families everywhere who are fighting DMD, Bruce Bryer will always be a hero. He was a gentle, unassuming hero to be sure, but a hero, nonetheless, one who saw beyond his own unremitting personal ordeal, who wished to help others above all.

As we work to fulfill our quest to defeat muscular dystrophy, we can do no better than to strive to follow Bruce's example and meet each new challenge with willing optimism, fighting spirit and a relentless determination to never give up.

With every good wish . . .

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