Goodfellows: Battle with sickle cell anemia calls for family to sacrifice

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A year after Japhet Kodjo was born, he was sick and back in the hospital, his anxious parents holding their breath as the doctor awaited the results.

"We did the tests, and he told us to pray hard," the boy's mother, Essie said.

Then the news came, a parent's nightmare: The traits both parents carried for sickle cell anemia had been passed to their son. In their native West African country of Togo, children die often from the genetic disorder, in which red blood cells form an abnormal crescent shape, making blood flow difficult.

About 10 months later, Ms. Kodjo moved her three children across an ocean, hoping treatment in Pittsburgh could ease the lifetime of unpredictable pain for Japhet, even though the disease has no cure.

"That's why I'm thankful we came over here," Ms. Kodjo said. "It's very scary back home."

Few families know sacrifice like this one.

When Mrs. Kodjo settled here eight years ago, her husband, Felix, stayed back in Togo to work. He visited twice a year, but overstayed his last trip and is now barred entry into the U.S., she said.

The Stowe family talks with Mr. Kodjo by phone, but they don't know when they'll see him next, and it's too costly for Ms. Kodjo to fly home, especially since she now has four children. They have permanent residency here and came to Pittsburgh because Ms. Kodjo's sister had been living here while her husband attended graduate school.

Ms. Kodjo works at a Downtown day care center. Shortly after she started the job, she got a call from Japhet's school about his latest "pain crisis" and had to rush him to the hospital. Her employer has been understanding of how unforeseen those crises can be, she said.

There were few options back home. Ms. Kodjo recalled seeing too-thin children with buggy eyes suffering from the disorder.

"That disease kills a lot of kids back home," she said.

Japhet is 10 years old now. On a recent evening, he romped around the living room with his siblings, looking healthy.

His last weeklong hospital stay was in May. Since switching medications in the summer, his red blood count is up and his pain less frequent.

"I try to forget about it," a shy Japhet said. "I play like I don't even have sickle cell."

But on other days, the crippling pain will strike unannounced in his limbs, once so bad he lost feeling in his leg at Sto-Rox Elementary, where his mother said he's in the gifted program.

When he's in pain, his mother said, Japhet can't eat and needs intravenous fluids for nourishment. And then there's the more frequent disruptions the disease brings, like fatigue and aversion to cold, which could shrink blood vessels and cause pain.

The latter challenge prompted Children's Sickle Cell Foundation, a nonprofit on Mount Washington, to organize a Saturday swim period at a YMCA pool between May and October for kids with the disease. The pool water is heated to 91 degrees, and the children -- and their families -- are fed a meal and given hot towels.

The program is now in its sixth year.

The Kodjo family participates in several foundation programs, but because they don't own a car, they have to rely on public transportation or rides from friends in the organization.

"It takes a lot of effort to get up and get four kids ready to come out to programs, and we appreciate that," said the foundation director, Andrea Williams.

The family has participated in all five of the foundation's Season2Give events. This year, a toy drive with Savoy restaurant in the Strip District will be held through Friday. Those who bring an unwrapped toy for "Toys at Savoy" will be entered to win a $25 restaurant gift card.

Japhet will receive items from the Toys for Tots program, organized by Pittsburgh Cares and the Marine Corps and funded by contributions to the Pittsburgh Post-Gazette Goodfellows Fund.

Tax-deductible donations can be made using the coupon accompanying this story or at All contributions are listed in the newspaper.

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neigh_west - holidays - health

Molly Born: or 412-263-1944. First Published December 17, 2012 5:00 AM


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