Hemophilia treatment for a little boy includes daily doses of medication — and a lot of love

LUTZ

Evan Workman barely flinches as his mom inserts a needle into the intravenous port in his chest. He watches Star Wars on video and drinks his milk while he gets five vials of medicine.

Born with hemophilia, the 4 1/2-year-old is accustomed to needles, "pokes" he calls them, which he receives every other day to help keep him healthy.

The inherited blood-clotting disorder causes Evan to be deficient in a blood protein called factor VIII. He receives a synthetic substitute intravenously that prevents spontaneous bleeding and helps stop bleeding in the event of a cut or injury.

The treatments have become a normal part of life for Evan, and he takes them in stride.

But dealing with her son's condition has been a struggle for his mom, Sara Workman.

"My daily life is affected by worry, but I've become accustomed to it," said Workman, who spends her days caring for Evan and his 13-year-old brother, Noah, at their Lutz home.

Approximately one in 5,000 males is born with the disorder, according to the Centers for Disease Control and Prevention. Workman hadn't found a lot of support locally in coping with its daily challenges. She had a hard time meeting other moms dealing with the issue in young children.

She became active in the Hemophilia Foundation of Greater Florida when Evan was about 7 months old. The foundation serves more than 5,000 people with bleeding disorders, providing financial support, education, scholarships and other services for patients and their families.

The foundation sponsors the annual Tampa Spring Walk for Bleeding Disorders, which is May 19 at Al Lopez Park, off Himes Avenue. About 400 people are expected to walk the park's track to raise money in support of the foundation's efforts.

"The primary purpose of the organization is to offer emergency financial assistance for people in need, such as for medical treatments or medicine," said executive director Fran Haynes. "Hemophilia is a lifelong disorder. We do whatever we can to improve the quality of life for people with the disorder."

As part of the larger National Hemophilia Foundation, the Florida foundation also helps fund ongoing research and advocacy efforts for the safety of the nation's blood supply.

In the early 1980s, when the nation's blood supply became contaminated with HIV, the virus that causes AIDS, many people with hemophilia were infected through their treatments. The NHF lobbied for improved blood screening, testing and manufacturing practices.

"Because of the foundation, our blood supply is now the safest it's ever been," Haynes said, "not just for hemophilia patients, but for everyone."

Workman has benefited from the efforts: "The foundation does a lot of great things for families," she said.

On the outside, Evan seems much like any other kid. He spills his milk and toddles around with mismatched socks. He zooms around with his toy car.

But his case of hemophilia is severe. If he falls or hurts himself, he's susceptible to internal bleeding that causes him to bruise and swell easily, possibly leading to severe joint damage or even death.

"The biggest difficulty is (the possibility of) joint bleeds, where he'd be incapable of movement, and head bleeds, where he could die," Workman said.

Evan has experienced both. At 16 months, he suffered spontaneous bleeding in his head.

"He lost motor function one morning," his mother said. "He couldn't sit up, hold a cup, or hold his head up."

She rushed him to the emergency room, where he was treated and, within 10 minutes, he perked up.

"I was told at the time that he was lucky to be alive," Workman said.

"There's a level of extra vigilance that has become normal to us," she said. "He likes to climb on the back of the couch, and I tell him no, not because I care if he climbs on the couch but because he has a history of that head bleed, so we have to be extra cautious."

Another time, Evan was playing outside and fell on the grass and hit his knee.

"Within 10 seconds, he was limping and couldn't put pressure on it," his mother said. The knee immediately swelled and bruised from an internal bleed.

Evan can't hang on the monkey bars like other kids at his preschool, nor can he swing on the rope swing at his grandfather's house. When he gets older, he won't be able to play contact sports.

"The older he gets, the more severe his limitations will be," Workman said. "There's a lot of things that he associates as normal, but he gets frustrated at times at those limitations and precautions."

Living with hemophilia is both emotionally taxing and financially draining on families. Evan's father, Michael, works at Entegra Power Group, and has medical insurance that covers the cost of Evan's regular treatments. Still, the family spent more than $7,000 last year on Evan's medical bills for hospital stays and procedures.

"The cost of Evan's medicine alone is $360,000 a year," said Workman, who has learned a lot about dealing with her son's disorder through the foundation's educational symposiums. She has also found emotional support through the organization's network of families.

"They're always there if I have a question about potential bleeds or pain. They're like family," she said.

During next week's walk, Evan, Noah, and their parents will walk as a team. Their name: "I'm Bruised not Broken."

Elizabeth Miller can be reached at hillsnews@tampabay.com.

If you go

Tampa Spring Walk for Bleeding Disorders, sponsored by the Hemophilia Foundation of Greater Florida, is May 19 at Al Lopez Park, 4810 N Himes Ave., Tampa. Registration is $25 per team and begins at 8 a.m. The walk begins at 9 a.m. For registration or to make a donation, go to hemophiliaflorida.org.

Hemophilia treatment for a little boy includes daily doses of medication — and a lot of love 05/10/12 [Last modified: Thursday, May 10, 2012 4:30am]

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