'True hero' is mourned


One by one, in the stifling heat, they came to pay their respects. They used walkers, leaned on canes and hung onto each other.

John Paul was dead. And no one could believe it.

For while the Baltimore man, 42, had long endured the terrible pain of sickle cell anemia, he had deflected attention from his disabling medical problem. Earlier this year, he shared the triumph of the Johns Hopkins physicians who made a breakthrough discovery after years of using him as a research subject.

In the midst of it all, he had managed to care for others.

In between hospitalizations, surgeries and bouts with the disease, he helped dozens of elderly and disabled residents at Marlborough Apartments on Eutaw Place where he lived. He got them eggs and milk, explained their tax forms and confusing paperwork, and, as a nurse, took their blood pressure.

"I was sitting there listening to the things that they were saying about my brother, and he wasn't even as old as I am, and look at all the people he touched," said his sister, Gwen VanWright. She watched an elderly woman shake her head over the casket, like many others who wondered how the man who did so much could be gone.

"He sure did take good care of us old people," the woman whispered.

She paid her respects at a viewing and was one of the more than 250 people who crowded into St. Abraham Baptist Church in Baltimore for services Saturday.

Mr. Paul died early July 11 at Johns Hopkins Hospital, and physicians are still awaiting the autopsy report. He had suffered organ damage and other complications from the disease, which killed his brother Craig. Another brother, Donald, suffers from it.

Sickle cell anemia is a blood disease that cripples and shortens the lives of about 150 of every 100,000 African-Americans.

As a youth growing up in West Baltimore, Mr. Paul was told he wouldn't live past 18. He loved books and wanted to be a doctor. But because he was sick almost half the time, he earned a nursing degree. He worked at Lutheran and Sinai hospitals, sometimes needing hospitalization himself at the end of a shift, his family said. Several years ago, his health forced him to stop.

Instead, he volunteered at Johns Hopkins Hospital, took food to shut-ins at Thanksgiving and befriended his neighbors, even dealing with the squeaking mouse in a glue trap in the middle of the night.

"I would be a nervous wreck. He'd just get out of the bed and come get it," said Stevie McDonald, 52, a Marlborough resident. "He just was a wonderful person. People say that after people die, but this is really true."

Mr. Paul also gave of his physical self, taking experimental drugs for years for research at Hopkins.

He was the first patient in the world to take the drug hydroxyurea for sickle cell anemia. Building on that work, Hopkins researchers were able to prove earlier this year that the drug is the first effective treatment for severe cases of the disease, cutting in half painful attacks, hospitalizations and transfusions.

Over the years, Mr. Paul risked unknown side effects for Dr. Samuel Charache, the physician who cared for him for 28 years until his retirement less than three weeks ago.

"He told me if there was ever in his life a cure for sickle cell disease, Dr. Charache would be the one person to find it," said his mother, Vivian Paul, "and that he would be his guinea pig for the rest of his life. He said he would take any medication that Dr. Charache prescribed for him."

Dr. George Dover, a pediatrician and Dr. Charache's collaborator, described Mr. Paul as a trailblazer.

"This guy was a true hero. I can't think of anybody that I have met in my 25 years who is more courageous and committed to finding a cure for this disease than John Paul," said Dr. Dover. "I was devastated. . . . I'm also a little bit inspired. All of us know that we have to work harder so that there aren't any more John Pauls down the line."

Dr. Dover plans to run a new clinic at Hopkins focused on chemotherapy for sickle cell disease. In that clinic, he says, a plaque will be dedicated to Mr. Paul.

At Marlborough Apartments, residents also plan to put up a plaque for Mr. Paul.

The family asks that memorial contributions be made to the Hydroxyurea Clinic in care of Dr. George Dover at Hopkins, 601 N. Broadway, Baltimore.

Mr. Paul is survived by a daughter, Tene Paul; his mother, Vivian Paul; and five siblings, Michael Paul, Carleen Paul, Gwendolyn VanWright, Cristine Jefferson, and Donald Paul, all of Baltimore.

This week, friends and family were struggling to adjust. Mr. Paul's 43rd birthday was Sunday, and a party had been planned.

At his apartment building yesterday, Ms. McDonald stayed in, listening to The Drifters sing "Up on the Roof."

"We used to listen to music and talk. He was a very giving person. If he was in pain, he would forget his pain and do for other people.

"It's going to be very quiet. Very quiet."

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