Yalew Birkie Assefa’s spine is curved so badly, it resembles a question mark. His twisted body squeezes his lungs. Doctors say his condition could eventually kill him. But he can’t afford the expensive surgery he needs.
Three years ago, he began canvassing the street of Addis Ababa, Ethiopia, where he lives, begging for donations. He went online looking for support groups and wrote seven or eight of them. Some said they couldn’t help. Others didn’t respond.
In June 2007, he wrote Debbie Ordes, executive vice president of the Scoliosis Association.
“This help seeking cry will have an answer to lift me up, to keep me from being discouraged and to make me productive again. There is not any slightest doubt that your support will be a second chance at life. Because of your help I will say goodbye to my pains,” wrote Assefa, whose first language is Amharic.
Ordes, 44, who lives in Palm Harbor and is also president of the Palm Harbor chapter of the association, wrote back. She asked if he had an X-ray and how severe the curve of his spine was.
“I became surprised,” Assefa, 30, recalled. “It tells me something good is coming.”
It was. But he would have to wait almost three years.
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Assefa was born in Debre Zeit, about 30 miles from Addis Ababa, Ethiopia’s capital. He was 13 when he was diagnosed with scoliosis, a condition none of his relatives have.
Specialists told him he wouldn’t grow much, but they didn’t expect him to have any major problems. Today, at about 85 pounds and 4 feet 9 inches tall, he’s about the size of a 10-year-old boy.
As he grew older his spine began to curve toward itself. By his late 20s, he struggled to walk a few hundred feet.
He was told that the surgery he needed in South Africa would cost the equivalent of $24,000. In the United States, more sophisticated surgery costs at least 10 times that. As a technologist working in an HIV lab, Assefa made around $200 a month.
Three years ago, after receiving Assefa’s X-rays, Ordes tried to schedule surgery for him close to his home. Within six months, everything was set for surgery in Ghana. But the week of the surgery, he was bumped. She tried to set up surgery in Uganda with another doctor, but the hospital wouldn’t cover the expenses. And an attempt to book surgery in the United States didn’t work out either.
Assefa had to wait.
“(Ordes) always advised me not to give up hope,” Assefa said. “My heart has already trusted her and developed hope.”
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Scoliosis, a sideways curvature of the spine, affects about 3 percent of the population.
Its cause can be neuromuscular or genetic. Assefa’s scoliosis is idiopathic, “meaning we don’t know what caused it,” said Dr. Anthony P. Moreno, who has volunteered to perform Assefa’s complicated surgery with Dr. Geoffrey Cronen at University Community Hospital in Tampa.
In serious cases, spinal curves can progress so much they can constrict the lungs, increase pressure in the veins and eventually lead to heart failure, Moreno said.
Assefa’s curve is about 130 degrees. Surgery is often suggested for those whose spines curve 50 degrees or more.
In the United States serious cases like Assefa’s are handled at a much younger age.
“Most times, in the U.S. we intervene long before it gets to that magnitude,” Cronen said.
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In 2009, the Scoliosis Association scheduled surgery at Mease Countryside Hospital in Clearwater for Tatiana Cojocaru, a young woman from Moldova in Eastern Europe.
During her preoperative tests, Ordes brought up Assefa’s case and asked Moreno if he would operate on Assefa, too. He agreed.
They spent the next several months working with Cronen to coordinate Assefa’s pro bono surgery team.
Assefa is the third person from abroad that Ordes and local medical teams have helped. Both previous surgeries were successful, Ordes said.
Cojocaru, who had surgery for a spinal curve similar to Assefa’s, says she’s doing well. Her spine now curves about half as much as it did before, she said Friday. She also gained more than 3 inches in height.
“I am enjoying my life now. I am going to school and doing a lot of things that make me happy,” wrote Cojocaru, 26, in an online note.
Both Cronen and Moreno were part of her surgical team.
With curves that severe, the goal is to reduce them by about half. That’s all the spinal cord can take safely, Moreno said.
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Assefa arrived here on Wednesday after a 17-hour flight with his mother.
He’s married and has a 9-month-old daughter named Hemen, and he’s hoping the surgery will improve his quality of life.
“You can’t eat well, you can’t speak well, you can’t even think well,” Assefa said.
He’s an Orthodox Christian and says he just wants to live to his potential and follow God’s will.
Over the next few weeks, Ordes plans to chauffeur Assefa to all of his pre-op appointments and look out for him while he is here.
Several medical facilities, and dozens of specialists and other health professionals have also volunteered services and equipment.
Assefa will stay in a Palm Harbor condo for three or four months, provided there are no complications, before returning home. It will take a year or two to fully heal, Moreno said.
A Canadian woman has raised about $16,000 to cover his living expenses while he is here. Assefa met her while soliciting donations. She was in Ethiopia conducting research for her master’s thesis.
Assefa is scheduled for two complex 10-hour surgeries, on April 29 and May 6.
During the first surgery, the surgeons make cuts in the spine to loosen it and make it easier to straighten. They also attach screws to each side of the spine and install temporary rods.
During the second, they remove a section of the spine where the curve is most severe. They place a small device where the vertebrae were and use permanent rods to manipulate the spine and correct the deformity.
The risk of death from the surgery is small, about 5 percent. The risk of paralysis is 5 to 15 percent, Moreno said. Cronen thinks it could be as high as 30 percent.
Assefa says he has no room for fear.
“What can I do with that?”
He’s in an advanced country, with sophisticated technology and facilities, he said, “so everything will be all right.”