There is a picture of Rogers Ssembatya in late 2011, a scant two months after he had undergone a complicated surgery to realign and fuse his spine.
Sitting in a wheelchair at Riverside Middle School where he was a student, the Uganda native had a smile on his face. He looked healthier than he had for a long time.
Rogers, then 15, pushed himself around the school with no problem. And the most important thing on his mind that day was whether his guardian, Terry Fettig, would let him go to a school dance.
That he was alive at all was due to the concerted efforts of many people in and outside the medical community. Fettig, a Billings contractor, led the campaign to help him, along with Nadine Hart, a physician assistant at St. Vincent, who initially found Rogers in a small village.
But now Rogers is back in Uganda, his wheelchair put away because he is no longer able to sit in it. His health is deteriorating and Fettig fears that without a return to the United States, Rogers will die.
All of Fettig’s attempts to get Rogers back to Billings have been stymied, and the Billings man is nearly at his wit’s end of how to remedy the situation he calls "a catch-22."
“Right now we’re working with an immigration attorney to get him humanitarian parole,” Fettig said. “It’s our last option.”
Rogers’ medical saga goes back to his early childhood, when at age 5 he suffered a bout of tuberculosis of the spine. The untreated illness gradually bent his spine nearly in half, making walking impossible and breathing increasingly difficult.
He was the son of a mentally challenged woman who neglected his health.
“He was the last to be fed,” Fettig said. “No one thought he would live very long because of his condition.”
Hart, who works with Help 2 One Life in Africa, found him in 2006. His legs, contracted underneath him, were covered in wounds. The boy had no clothes and was brought to her in a sheet.
Hart taught the nurses at a clinic there how to care for him. Then she came back to Billings, and she and others began to send support money to improve his nutrition and health.
Hart told Fettig about Rogers. And when Fettig went to Uganda, as part of AIDSpirit USA in Billings, to help start a sponsorship program for children to go to school, he met the boy and a bond quickly formed. Fettig helped find more services for Rogers and bought him a bed and a wheelchair.
From there, Hart and Fettig teamed up to get Rogers admitted to a rehabilitation hospital in Uganda, to try to straighten his legs so he could walk. When that didn’t work, they brought his condition to the attention of doctors at St. Vincent Healthcare, who agreed to evaluate his condition.
The pair raised $5,000 to bring Rogers to the United States in February 2010. Fettig agreed to be his guardian while the youth was in the U.S.
Over 18 months, physicians evaluated and treated Rogers, with all of his medical costs donated. He lived with Fettig and went to the South Side middle school.
Physical therapists helped relieve Rogers’ contractures — an abnormal shortening or shrinking of muscle and tendon — to make it easier for him to sit in a wheelchair.
His lung capacity was at only 35 percent, a factor that by itself would limit his life span. Eventually, Dr. Oheneba Boachie-Adjei, a renowned spinal surgeon from New York City, traveled at his own expense to Billings in October 2011 to perform a delicate surgery in which a portion of Rogers’ spine was removed, and the spine was realigned and fused.
After the surgery, Boachie-Adjei predicted his young patient would have a better quality of life and an improved lifespan.
“If he had been left in Uganda, he probably would not be around,” the surgeon said at the time.
Rogers graduated from Riverside in spring 2012. He had not yet been released from medical care, needing doctor visits to check the hardware in his back and prevent infection, and he needed to continue his physical therapy.
Fettig, as part of his work with AIDSpirit, had agreed to go to Kayunga Town in central Uganda in the summer of 2012 as general contractor for the construction of a building to house the Tender Mercies orphanage. He intended to be there for three months.
He decided to go in the summer so Rogers could go along and visit his mother, who was very ill. Fettig figured he would have no trouble obtaining another visa for Rogers to return and continue his medical treatment.
Fettig already had coordinated with a woman in Billings who volunteered to home-school Rogers so he could catch up in his studies. A Christian school in Billings also said he could complete his electives there.
With that in place, the pair left for Uganda. And while they were there, Rogers’ mother died.
But when Fettig went to apply at the U.S. Embassy in Kampala for another medical visa for Rogers to return to the U.S. to continue his care, the application was denied. Before the denial, Fettig spoke with a worker there who asked if Fettig intended to adopt Rogers.
Fettig said no, but the embassy official then made an offhand comment that it’s easier to adopt on the Uganda side. He said that to help Rogers, Fettig would have to find another way than the visa.
Fettig assumed that meant adoption, and he moved forward on that front, without seeking advice from an immigration attorney. Fettig submitted the necessary documents to adopt Rogers through the Ugandan court system, and he returned to Montana to complete the paperwork on the American side.
With everything apparently in place, including the adoption approved by a Ugandan judge, Fettig returned to Uganda in February 2013. He went to get the visa to bring Rogers back to the U.S. as an adopted child.
“I got to the embassy and they told me we had a major problem,” Fettig said. “They said, ‘he’s too old to be adopted. You’re filing this after his 15th birthday.’ ”
Fettig was again forced to leave Rogers in Uganda, at the Tender Mercies orphanage. He returned to the U.S. and contacted an immigration attorney.
The attorney advised Fettig to apply again for a medical visa, and if that was denied, to seek humanitarian parole as a last resort. Fettig returned to Kampala last August to apply for the visa.
He came armed with two letters from Boachie-Adjei. One explained that Rogers’ actual birth date was unknown, but having studied X-rays of Rogers taken at St. Vincent, Boachie-Adjei was certain the youth was 15 years old.
If the visa was denied, the surgeon also pleaded for humanitarian parole for Rogers, listing a number of medical reasons why it was critical for him to return to the United States.
“At this time, he faces life-threatening complications,” Boachie-Adjei wrote, adding that the care that Rogers needed is only available in the U.S.
At the embassy, Fettig said he “literally had to beg the interviewer to read the letters from the doctor.” Despite the surgeon’s statement, the medical visa was denied.
The attempted adoption, along with the fact that Rogers’ mother had died and he had no job or school ties to bring him back, the denial letter said Rogers had no incentive to return to Uganda.
So he remains at the orphanage, more or less bedridden because pressure sores, which required surgery, no longer allow him to sit up. He has to do self-catheterization three times a day, which has led to numerous urinary tract infections.
“He’s been in good spirits — he's doing better than me,” Fettig said. "He doesn’t feel good. He’s not the Rogers that he was before.”
Fettig talks to Rogers at least four days a week on the phone. He’d call every day “except the phone service is so bad in Uganda that some days I can’t get through.”
Fettig chokes up, tears in his eyes and frustration in his voice. He only wants to help Rogers. That’s why he initiated the adoption. And now the adoption may keep him from getting back to Montana to get the medical care he needs.
So many people came together to give Rogers a new life, with better health and a future, Fettig said. And continued red tape may stymie that from happening, despite the fact that the cost of the medical care will be covered.
“Maybe he would have been better off if I just left him the way he was at the beginning,” Fettig said. “He’s going through the suffering and the pain all over again and not knowing what will happen.”