Part I: The fear of hopelessness

Photo illustration for part one of three feature series. (U.S. Air Force photo illustration by Tech. Sgt. Javier Cruz/Released)

(U.S. Air Force photo illustration by Tech. Sgt. Javier Cruz) (This image was manipulated by adding text to the top and bottom of the image.)

TYNDALL AIR FORCE BASE, Fla. -- Editor's note: This is one of a three-part series about the obstacles U.S. Air Force Maj. Lukiah Mulumba and her family have faced with sickle-cell disease and how the Air Force helped her persevere.

Lukiah Mulumba had no idea that one day her resolve would be tested and her determination would touch the lives of millions.

Lukiah came to the United States from her native country of Uganda in 1995 on an educational scholarship when she was 22 years old.

She graduated with a bachelor’s degree in nursing and began working at the Johns Hopkins Hospital in Baltimore. She became pregnant during this time and learned that her first child would be born with sickle-cell disease.

“Coming from Africa, sickle-cell is something that is treated as a taboo, as a horrible disease,” said Lukiah, who is the primary care flight commander at the 325th Medical Group. “When I was growing up, the people who are born with the disease were discriminated against, left to die. Families are destroyed. So I was very scared.”

According to the National Institutes of Health, sickle-cell is a red blood cell disorder that results in abnormal hemoglobin. Healthy hemoglobin take up oxygen in the lungs and carry it to all the tissues of the body. Their disc shape allows for the flexibility to move through large and small blood vessels to deliver oxygen.

Sickle hemoglobin form stiff rods within the red cell, changing it into a crescent, or sickle shape. The cells are not flexible, and they can cause blockages that slow or stop the flow of blood, which means oxygen cannot reach the tissue.

The loss of blood flow can cause chronic and severe pain, and may also cause organ damage.

“I was hiding a secret and was in denial about the diagnosis. One day, I was home alone with my newborn baby, Carol, and there was a knock on the door. Carol’s state screening test results arrived by FedEx. There was a letter from the state of Maryland, it explained that my daughter had a devastating disease. She’s going to live a hard life. She would have strokes, lung problems, and her brain would deteriorate,” Lukiah said.

Lukiah was angry and alone, contemplating suicide. “I had this strong feeling that said, ‘No, don’t do it.’ It was a devastating time. I was alone, cut off from my friends. I wasn’t eating, and the child was losing weight. I did not have meaning to life. No one understood. I was living in a dark depression for two years.”

Her friends knew the seriousness of the situation, since many of them worked with her as doctors and nurses, but Lukiah was ashamed that she was a carrier of the gene and had passed the disease to her daughter.

She decided to leave Baltimore and head northwest to Michigan, looking to get away from everything. “I took a train and just disappeared in Michigan, that’s where Abdullah, my future husband, found me.”

The Mulumba’s would soon find out that Lukiah was again pregnant, despite use of a birth control device. While expecting a second child, knowing she was a carrier of the Sickle-cell trait, Lukiah was confronted with a difficult decision.

“A civilian doctor told us there was nothing more he could do and gave us information on local abortion clinics,” Lukiah said. “My husband held me and asked why I was crying. I said it was because I have a child with Sickle-cell, and I’m pregnant again. He asked me if I believe in God, and I said yes I do. He said, ‘Why don’t we just lean towards God and struggle.’”