Gustavo Adolfo Sierra Santos suffered from epileptic seizures the majority of his life. Although there is no current cure for epilepsy, the chronic neurological disorder can often be successfully managed.

Life-Saving Journey

INTEGRIS partners with several local agencies to offer care in Oklahoma for Central American man living with epilepsy

Gustavo Adolfo SierraGustavo Adolfo Sierra Santos suffered from epileptic seizures the majority of his life.

Although there is no current cure for epilepsy, the chronic neurological disorder can often be successfully managed. Medications, and sometimes surgery, help about 80 percent of people living with the disorder to control the unprovoked, recurrent seizures caused by a sudden rush of electrical activity in the brain.

The now-30-year-old Santos received a vagus nerve stimulator implant as a teenager growing up in the Central American country of Honduras. The device is surgically placed under the skin on the chest and sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to stop seizures before they start. The VNS device is sometimes referred to as a “pacemaker for the brain,” and dramatically improved Santos’ condition and quality of life.

However, Santos’ implanted device stopped working when he was in his 20s, and despite taking multiple medications each day, Santos would suffer three to four severe seizures a week that involved a stiffening of his body and rhythmical jerking that taxed him physically, had the potential to cause brain damage and threatened his life.

Epilepsy affects about 65 million people around the world, with almost 90 percent of people with the disorder living in developing regions like Honduras. Approximately three million people in the United States have the disorder, which raises the risk of Sudden Unexplained Death in Epilepsy — the leading cause of death in people with uncontrolled seizures who are otherwise healthy.

Santos’ father Santos Gustavo Sierra Ordonez lives in Tulsa, Okla., and turned to the Epilepsy Foundation of Oklahoma in 2017 as he sought help for his son living more than 1,500 miles away.

Ordonez could afford to bring his son to Oklahoma for the implant device replacement surgery his son desperately needed, however he did not have the means to pay for theGustavo before surgery procedure or the medical costs that would follow.

Jenniafer Walters understood what Santos’ father was going through. The Epilepsy Foundation of Oklahoma’s Executive Director also has a daughter who lives with epilepsy and started looking for ways the organization could help Ordonez and his son.

“We don’t usually do this sort of thing, but given that in Oklahoma we recently lost 20 children to Sudden Unexpected Death in Epilepsy, I felt compelled to help out,” Walters said. “I feared for this young man’s life considering the state that he was in and living with this first-hand, having a daughter who has epilepsy, I understand what this father was going through.”

INTEGRIS stepped in to assist, partnering with numerous local Oklahoma agencies and medical staff along the way to assist Santos.

Walters reached out to LivaNova, the company that manufactures the vagus nerve stimulator device and the company agreed to provide the replacement device free of charge.

After learning of Santos’ story, INTEGRIS Baptist Medical Center agreed to waive all hospital fees and reached out to Diagnostic Laboratory of Oklahoma, which agreed to cover all lab costs involved.

Salman Zubair, M.D., with St. Anthony Hospital, conducted the required pre-surgery neurological evaluation. Perry Santos, M.D., M.S., from the Otologic Medical Clinic, performed the surgery in July 2017 at INTEGRIS Baptist Medical Center. Michael Kutner, M.D., of INTEGRIS, served as the anesthesiologist. All three physicians offered their services on a pro bono basis.

Now almost two years later, Santos is living a healthy and happy life in Honduras. He returns to Oklahoma to be honored during the June 22 INTEGRIS “Home Run For Life” baseball game at Chickasaw Bricktown Ballpark.

The OKC Dodgers partner with INTEGRIS each baseball season to honor five individuals who have overcome a significant medical event in the Oklahoma City area with the help of their families, physicians and health care professionals. To symbolize the end of their battle against adversity, honorees take a home run “lap” around the bases during an in-game ceremony.

Through an interpreter at the Epilepsy Foundation of Oklahoma, the Santos family sent this message to all of the organizations involved with the care of their son:

“We are so very thankful for the generosity being offered to our family. True compassion has the ability to reach across borders and break down barriers. In this case, kindness really will save a life. And who knows, by raising public awareness of epilepsy, our story could quite possibly save more lives than we will ever realize.”