Blood Condition Matter Of Survival

TAMPA - All things being equal, the three little boys already would be ample cause for a mother's worry.

Christopher, 8, Christian, 5, and Chrishawn Moore, 4, live in a small house in a rough neighborhood east of Ybor City. On weekday afternoons, men sit outside at a home across the street, smoking and staring. Tractor-trailers attempt to maneuver into a nearby side yard filled with rusting parts.

But a pet dog named Diamond needs to get outside, and so do little boys after a long day at school.

Ricktreka Jones' sons have hemophilia. It's nothing new to her - two brothers, four uncles and 18 cousins also have the bleeding disorder. Her boys play T-ball, soccer, basketball. She wants them to feel like everybody else.

"It's hard raising them as a single mother, struggling and everything," she says as the boys wrestle Cheetos from Diamond and burst in and out of the front door after trips through the neighborhood on their bikes.

Keeping the boys healthy adds another layer of concern.

"I'm struggling two times harder than I would otherwise," she says.

With no job and no insurance, she relies on a network of physicians, social workers and nurses. Four days a week, the same nurse who cared for one of her brothers arrives to give the boys their lifesaving but costly infusion of drugs. For one child, regular treatment can average $6,000 a week, which doesn't include syringes, alcohol and other supplies. Medicaid picks up the tab.

"Some days, I don't know where the next meal will come from," Jones says. When she gets in financial trouble, she calls the Hemophilia Association of Greater Florida, based in Winter Park, where she knows Executive Director Fran Haynes will figure something out.

"She's my heart," Jones says.

On Saturday, Jones will wrangle her boys into the car and head for Ballast Point Park, where the hemophilia association will host its first fundraising walk-a-thon in the Tampa area.

"The boys and I don't have any sponsors yet," Jones says. "But we'll be there anyway."

Haynes says thousands of Floridians have bleeding disorders, although exact numbers are unknown. Her agency helps with referrals, education and advocacy; sends children to camps where they learn to give themselves medication; sponsors family retreats; and provides emergency financial aid.

The organization regularly takes calls from physicians at local hospitals with hemophiliac patients who, like 21 percent of Florida's population, are uninsured. It provides money for treatment until the patient can get on disability or regain coverage through a new job.

Uninsured patients received a reprieve in April, when the Legislature temporarily rescued the Medically Needy program, which covers lifesaving treatment for the chronically ill. About $300 million will be used from a state trust fund, but only until July 2009. At that time, only pregnant women and children will continue to receive aid.

Haynes is worried about young adults who don't have jobs with good insurance coverage but need the drugs to survive.

"Insurance is a huge issue for them," she says. "Sometimes they have to go on disability, which means they aren't allowed to work."

They face other hurdles, as well.

"Some of them have never been to a dentist," Haynes says. "Some dentists are afraid to take them, fearing they have HIV."

In the 1980s, about half of hemophiliacs contracted HIV through the nation's blood supply. Ryan White, an Indiana boy with hemophilia, was expelled from school in 1984 when he was diagnosed with AIDS. For years, hemophiliacs carried the stigma, even after the blood supply no longer carried the virus.

White died of complications from AIDS in 1990, a couple of years before Brett Palaschak, 16, and his classmates were born. Brett, who attends Riverview High School, says the stigma is gone. His computer sign-in is "hemophilia guy," and his friends know he has it.

"The thing that bothers me is people think if I get a cut, I'm going to bleed to death," he says. "Or they want to know if it's contagious."

It isn't, and most hemophiliacs know their biggest concern is internal bleeding in their joints. Brett, who was diagnosed at 3 months, has been injecting himself with his medication since he was 7.

"You can feel it, but I'm used to it," says Brett, who one year demonstrated the process to his class as a science project. "I mean, I have to be careful. I don't play football, but I can swim and go bowling."

The sophomore, who carries a load of honors and advanced placement classes, hopes to become a doctor working with hemophiliacs.

Lynne Champagne of Bradenton had no idea her daughters could be at risk for bleeding disorders.

"Becky had just started her menstrual cycle," Champagne says. "She woke up in bed in a pool of blood. We rushed her to the hospital, where she was given transfusions."

Champagne and her husband, Roger, learned both daughters had inherited von Willebrand disease, which is caused by a deficient blood protein.

Becky takes hormones to prevent menstruation, or "every time she has a cycle, she would just bleed and bleed," her mother says.

"At first, I didn't want to let them out of the house."

Eventually, she grew more confident that the girls could manage.

Becky, now 16, vividly remembers the day she almost bled to death.

"It was just horrible. I was just as freaked out as my mother. Maybe more."

Tom Truncale, a Tampa physician and associate professor of medicine at the University of South Florida, has a son with hemophilia and serves on the hemophilia association's board. He says many obstetricians and gynecologists are unaware that heavy menstrual bleeding can be a symptom of von Willebrand disease.

Truncale, too, worries about the fate of those with hemophilia and other bleeding disorders. He says only 25 percent worldwide receive the treatment they need.

"These are functional people who can expect to live full lives," he says. "But they need medication. I have insurance, but I'm one of the lucky ones. It's just tragic that we live in a country with so much, and yet people still have to worry about this."