UT Health doctors diagnose rare disease in Honduran teen | UToledo News

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UT Health doctors diagnose rare disease in Honduran teen

Honduran native Benjie Benitez traveled across the world in hopes of finding answers to a mysterious neuromuscular disorder that has left him in a wheelchair.

Dr. Jeffrey Hammersley asked Benjie Benitez how his hands were doing during a visit to UT Medical Center earlier this month. The Honduran teen was diagnosed with a rare mitochondrial disease that leads to muscle breakdown.

Dr. Jeffrey Hammersley asked Benjie Benitez how his hands were doing during a visit to UT Medical Center earlier this month. The Honduran teen was diagnosed with a rare mitochondrial disease that leads to muscle breakdown.

After two weeks of tests in June, the doctors at The University of Toledo Medical Center determined he has a rare mitochondrial disease, which affects the protein in his cells and leads to muscle breakdown.

The diagnosis was possible thanks to a collaboration between CedarCreek and UTMC in an ongoing medical mission clinic in La Ceiba, Honduras.

The 18-year-old doesn’t speak English, so he used a translation machine to communicate with UT Health doctors. He also used his music to bond with people he met during his first trip to America.

The former track star brought his guitar to a recent appointment with cardiologist Dr. Samer Khouri. He played a song for everyone as a way to offer thanks.

“We are happy to find an answer, but unfortunately, there is no cure,” said Dr. Kris Brickman, founder and director of the UT Office of Global Health, and professor and chair of the Department of Emergency Medicine. “He has been seen by many doctors and after an exhausting number of tests, scans and evaluations, no one has been able to find a diagnosis or treatment for this illness — until now.

“Hopefully, we can slow the progression of this disease with a series of vitamins and medicines, which we are starting right away,” Brickman said.

CedarCreek Church paid for Benitez and his mother, Martha, to fly to America. CedarCreek heard about Benitez’s condition during a mission trip and asked UTMC doctors to help with the diagnosis.

Benitez arrived May 27 and stayed until June 11. He met with Khouri, director of echocardiography, director of the heart station and professor of medicine; Dr. Boyd Koffman, director of neurology ambulatory services and professor of neurology; Dr. Dalynn Badenhop, director of cardiopulmonary rehabilitation and professor of medicine; Dr. Bashar Kahaleh, chief of the Division of Rheumatology and Immunology, and professor of medicine; Dr. Jeffrey Hammersley, chief of the Pulmonary Division and associate professor of medicine; Dr. Blair Grubb, director of electrophysiology services and professor of medicine; and Dr. Donald Cameron, assistant professor of neurology.

Up until a few years ago, Benitez was an athlete, his mother said. He was a strong and healthy young man. He started having trouble with muscle control, which progressively worsened leaving him needing a wheelchair.

Benitez wrote an email that expressed his gratitude: “I’m almost in shock of happiness that this is happening; thank you for caring for my family. God bless you all for everything you do.”

Brickman said Benitez is overwhelmed that anyone would do this for him.

“We aren’t considering this anything special,” Brickman said. “This is taking some time, but it is the right thing to do. We aren’t getting reimbursed for any of this.”

Bill Trout, executive pastor at CedarCreek, said many people approach his church for help, but Benitez’s case was unique.

“It is an opportunity to help Benjie, but it is an opportunity to teach students about a case that the doctors in Honduras haven’t been able to diagnose,” Trout said.

Benitez and his mom split their time staying with Trout and his family. They also stayed with Sean Siwa and his wife, Yeimy, who is from Honduras.

Siwa, who accompanied Benitez to his appointment with Khouri, said Benitez is sick, but he still smiles because he loves music.

“The guitar is helping,” she said. “He has a hard time using his hands because of his muscle problem, but he plays anyway.”

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