DATE: Thursday, September 18, 1997          TAG: 9709170198

SECTION: NORFOLK COMPASS         PAGE: 06   EDITION: FINAL 

TYPE: COVER STORY 

SOURCE: BY JOAN C. STANUS, STAFF WRITER 

                                            LENGTH:  111 lines

GRIEF BECOMES A CAUSE GRANDSON'S PAINFUL DEATH FROM SICKLE CELL ANEMIA SPURS ACTIVIST TO CAMPAIGN FOR A CURE.

THE PHOTO OF Roy Perry-Bey's grandson is plastered all over his office: on the walls, on a computer screen, on buttons, watches and letterhead.

Propped on his elbows, the toddler grins at the camera, sporting two newly emerged front teeth and brown eyes that twinkle with happiness.

But the picture is deceptive. Keon Paschal Perry's short life was filled with excruciating pain, prolonged suffering and constant bouts in the hospital. The 2-year-old died suddenly in March after suffering from complications with sickle cell anemia, an inherited blood disease that occurs primarily in blacks and, less commonly, in those of Mediterranean origin. At present, the disease is incurable.

Perry-Bey and his family were devastated. In the aftermath of the child's death, Keon's mother - Perry-Bey's oldest daughter - attempted suicide twice.

But the 39-year-old Norfolk man - who held his dying grandson's hand during those last few moments - turned his overwhelming grief into a cause for action.

Not long after Keon's death, Perry-Bey, a veteran Hampton Roads human and civil rights activist, established an organization dedicated to building public awareness about sickle cell anemia and securing increased testing and research into gene therapy and bone marrow transplantation. Named in honor of his grandson, the organization's primary aim is to ``Keep Hope Alive'' for victims and families.

``Keon's death changed my life forever,'' Perry-Bey admitted while sitting in the Wards Corner office of Keon Paschal Perry Inc. ``He suffered a lot. He had constant crises. I think about how horrible he died and some days it really gets me. . . . But after he passed, I began to see where the Lord was taking me. I got in the ring to see if I could make a difference.''

Perry-Bey blames his grandson's death on the medical establishment's ``inexperience'' in treating the disease during an emergency. He also maintains local agencies didn't have adequate support to help family members cope with their loved one's suffering and, eventually, his death.

``How many children have to die before we take this disease seriously?'' Perry-Bey asked. ``I don't accept this is just an African-American disease. We have make people aware that this thing affects everybody. Disease has no boundaries, so why should we?

``It's a terrible thorn in the side of humanity, and because it's seen as an Africa-American disease, it's been minimized, and civil and human rights have been violated.

``The discussion about the disease has taken an ugly twist, he said. It's divided us into different races.''

The former local NAACP official points to scant insurance coverage for transplantation and costly insurance premiums for carriers of the trait. In some cases, he adds, carriers are unfairly denied employment.

Still, Perry-Bey advocates mandatory prenatal testing for the disease. Some 12 states currently require it.

According to ``The American Medical Association's Encyclopedia of Medicine,'' about 150 African-American children in every 100,000 suffer from the disease. About one in 12 has the sickle cell trait. A 1987 study found that 13 of every 3,619 Caucasians are affected by the disease.

``I'd like to force the General Assembly to develop monitoring agencies to keep up with the numbers so we'll know what we're dealing with here,'' he said. ``I believe the funding is under-representing the problem. It's becoming frightening . . . we're going to allow this thing to be so widespread, it will infiltrate the whole of society.''

For his part, Perry-Bey has solicited help from friends, colleagues and area church leaders to put together a marketing campaign of public service announcements, billboard displays and a ``blue-ribbon'' committee to investigate the needs of the Hampton Roads community. He's gotten some financial support from them, but mostly has funded the fledgling organization with his own money. So far, eleven churches and businesses have contributed.

But after a fallout with a national organization and several local entities, Perry-Bey says he wants no ``prohibitive'' restrictions placed on him by agencies or accusations ``that we're harming their funding.''

To help raise funds, the organization has begun selling buttons and watches with Keon's photos. Also planned is a ``Keon Tie-a-Ribbon Sickle Cell Anemia Day'' for Sept. 27, in which ribbons will be distributed so the public can show support for the cause; and a family awareness day in Newport News Oct. 18 to bring together families affected by the disease.

``Awareness can be as important to a cure as anything else,'' contended Perry-Bey. ``The message simply hasn't gotten out correctly. The discussion needs to go downward to the people who have the disease. We need to break up the infighting among researchers and funded agencies and pool our resources to work in the best interests of humanity.''

Community leaders like Frederick L. Overby-El, head of the Newport News-based Moor's for the Advancement of the Nation, agree.

``I've lost several friends to sickle cell anemia,'' he said. ``It's time to heal now and take aim at a cure. The disease has been going on for 180 years. We're not just asking people to open their pocketbooks. We need more than money; we need individuals to volunteer, to understand the fight and elicit their churches, their social clubs and other groups to donate time to pass out literature or help in other ways. Together, we can make a difference.''

Added the Rev. James Prevette of the Virginia Beach-based Christian Soldiers of America: ``The progress they're making in sickle cell anemia is not keeping pace with the gene research in other diseases. We have to change that. And we need to make people aware that this is not just a black thing; it's an everybody thing.''

To Perry-Bey, it's also a family thing.

``It gets pretty overwhelming,'' the Norfolk resident admitted of his loss. ``But instead of complaining about the problem, I'm going to focus on doing something about it.

``Keon was a beautiful child. I don't want his death to be in vain.'' MEMO: Those interested in volunteering to help fight sickle cell anemia

can call Perry-Bey at 480-3075. ILLUSTRATION: Photo

Keon Paschal Perry died from sickle cell anemia in March at age 2,

inspiring his grandfather to organize a push for more research.

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