This post was originally published on Michigan Chronicle

By J. Nathan

As the pain of a sickle cell attack pierced Ja’Sean Smith’s legs, back and feet, he imagined it was another visitor from the monster, “Jeepers Creepers.”

Sometimes, the pain left the then six-year-old Detroiter so drained, he was unable to move, and unwilling to let his mother touch him. He couldn’t lie down, so he got up. When he got up, he was so weak he had to lie down.

His mother, Tuweka Smith, 44, of Detroit, said it was like watching him being tortured, and all she and her husband, the Rev. Michael Smith, could do was watch and pray. The monster often sent Ja’Sean to the hospital; it was mean—and ugly.

“He’s got a black face, black body and black neck, and he eats you,” Ja’Sean explained. “He can’t talk. He just slides in and gets you. I try to kill him, so I don’t get sick anymore.”

As a youngster, Ja’Sean was rushed to the hospital three times in a three-month period, once for a 10-day stay. His health turned around when he began taking hydroxyurea, a cancer drug used for adults with sickle cell since 1995.

A decade ago, researchers found it effective for children with sickle cell, even those younger than 19 months. Within months of taking hydroxyurea, Ja’Sean’s doctors knew it would be effective for him.

Now, he’s 16, and able to play sports and rarely has severe pain or hospital visits except for monthly blood transfusions that help keep his blood from clotting and preventing strokes.

“I’m keeping a positive outlook on everything,” said his mother. “I think about him living a long life with the disease with new medications and things coming out to help the disease, things helping with a better, productive life. I try to do everything the doctors tell me so I can get a positive outcome.”

When Ja’Sean described his pain as an ugly monster, Dr. Yutaka Niihara, lead investigator at the Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center who led research for the patent-protected drug, says sickle cell, indeed can be very ugly.

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