Defying the Odds: Father's Love Leads to Life-Changing Surgery

When doctors in Honduras told Ramon Rivera that his young son, Erick, would not live past the age of 4, Ramon refused to accept it.

Now 18, Erick has defied the odds. He recently underwent several life-changing spinal surgeries at Cedars-Sinai-the only hospital the Rivera family says gave them hope after nearly two decades.

Erick was born with Escobar syndrome, also called multiple pterygium syndrome, a group of rare genetic disorders that can lead to severe skeletal deformities and even death. The condition causes joints to contract and stiffen, limiting normal movement. Patients often also develop a severe spinal curvature.

The diagnosis came with an uncertain future, and physicians back home country offered little treatment, hope or guidance. Ramon and his wife, Viena, relentlessly searched for answers. They held onto faith even as one doctor told them Erick was a lost cause.

"I'll never forget what that doctor said," Ramon recalled. "He told us we were wasting our time and should start saving money for Erick's funeral. But as parents, we can't just accept a 'no' when it comes to our child's life."

Twisted Spine, Risky Options

Over time, Erick's condition had progressed so dramatically that his chin was fused to his chest, and the back of his head rested on his spine. His scoliosis and kyphosis-curvatures of the spine in multiple directions-left him unable to sit up straight or breathe comfortably.

The family's journey brought them thousands of miles from Honduras to Los Angeles and to the care of pediatric spine surgeon Kenneth Illingworth, MD, director of Pediatric Orthopaedic Trauma at Cedars-Sinai Guerin Children's.

"His spine looked like an accordion," Illingworth said. "His ear was resting on his shoulder, causing skin breakdown and severe pain just sitting in his wheelchair. It was one of the most complex and extreme spinal deformities I've ever seen."

Despite the risks associated with such a complex surgery, including paralysis and death, the family decided to move forward.

"We hadn't come this far to give up," Ramon said. "Dr. Illingworth told us, 'We can either do nothing or do something.' And he believed something could be done."

Leaps of Faith

Erick uprooted his life and spent more than three months at Cedars-Sinai while undergoing a series of three surgeries to slowly and safely correct his spinal deformity.

First, Illingworth and his team placed a halo tractiondevice around Erick's head to gently stretch and align the spine over several weeks. Then came a procedure to release the congenital spinal fusions contributing to the curvature. Finally, Erick underwent a complex neck-to-pelvis spinal fusion that changed the trajectory of his life.

Erick's nurse navigator throughout his care at Cedars-Sinai, Meliza Perales, RN, said she'll never forget the young man's resilience.

"We called him the 'thumbs-up kid,'" Perales said. "Even after surgery, when he was in pain or tired, he always had a smile and a thumbs-up for us. He brought joy to our unit, and it was clear he was fighting every day-not just for himself, but for his parents, too."

While Viena stayed by Erick's bedside and Ramon continued working to support the family, both parents drew strength from their son's unshakable spirit.

"He never lost hope. And he never stopped smiling," Ramon said. "That gave us the strength to keep going."

Whole New Life

The surgery and treatment results have been transformative.

Erick has gained several inches in height. He can breathe more easily, sit upright, and go about his day without pain. He has started learning English and is eager to pursue new academic and personal goals.

"I feel so much better-infinitely better, physically and mentally," Erick said. "My health improved, my self-esteem improved-everything improved."

For Illingworth, Erick's case is a powerful reminder of what's possible when families and medical teams work together with courage and trust.

"Ramon and Viena never stopped advocating for their son," Illingworth said. "And Erick never gave up. That combination-plus a team willing to take on tough cases-made all the difference."

With Father's Day approaching, Ramon says he doesn't need any gifts this year. He already has everything he could ever want.

"As a father, all you want is for your child to have a chance," Ramon said. "We were blessed with that chance-and we'll never forget everyone who helped us get here."

Read more on the Cedars-Sinai Blog: Seeking a Second Opinion for a Spine Condition