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 in their 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 traction device 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

Like any typical 10-year-old, Brandon Bateman loved being outdoors and staying active. But when he complained of severe back pain and feeling winded after a short bike ride, his mother knew something was wrong.

“Everything seemed fine before then,” Brandi Bateman said of her son. “Brandon was a very active child. You know, he enjoyed roller coasters, bicycling, gymnastics, jumping off roofs into the pool. You name it, he did it. He loved it all.”

Five years ago, amid the COVID-19 pandemic, a pediatrician suggested genetic testing, which showed Brandon had Marfan syndrome. It’s a genetic disorder that affects connective tissue—the fibers responsible for providing structure and support to organs and tissues in the body. People with Marfan syndrome are often tall and lanky with unusually long limbs, and the condition affects various parts of the body, including the heart, lungs, blood vessels, eyes and skeleton.

February is Marfan Syndrome Awareness Month, highlighting the genetic condition that affects approximately 200,000 people in the United States. The symptoms can vary greatly from person to person. Some patients have mild symptoms, while others, like Brandon, face significant health challenges requiring medical intervention.

Surgery to Breathe Better

Marfan syndrome caused Brandon to develop severe scoliosis—a progressive condition that causes the spine to curve sideways and was the culprit behind his debilitating back pain.

“The scoliosis just got worse,” Bateman said. “It seemed like overnight.”

At the time of his diagnosis, Brandon’s spine was curved at 23 degrees. Four years later, in April 2024, the curve in his spine had nearly tripled to 62 degrees. A typical curvature is about 10 degrees. Brandon’s curvature was so extreme that spinal surgery was recommended.

Initially, Brandon and his family, who live in Tehachapi, California—102 miles from Cedars-Sinai—sought medical care closer to home. But after facing lengthy wait times to see specialists, the Batemans were referred to Kenneth Illingworth, MD, a pediatric spine surgeon at Cedars-Sinai Guerin Children’s.

“In Brandon's case, the scoliosis was so rapidly progressive that he actually started to have stretch marks, which is quite unique,” Illingworth said. “When you have big, big curves, which is not uncommon in kids with Marfan, they start to have long-term health consequences.”

Like most children and teens with Marfan syndrome, scoliosis wasn’t the only pressing issue. In addition to his progressive scoliosis, Brandon had a deep indentation in his chest known as pectus excavatum, a common condition associated with the syndrome that causes the breastbone to sink into the chest. The chest indentation required another surgery. 

“Brandon had a very deep pectus excavatum defect, where his sternum was heading back toward his spine and compressing the area where the heart would be. As a result, the heart was being squished and pushed over,” said Eugene Kim, MD, surgeon-in-chief and associate director of Surgery at Cedars-Sinai Guerin Children’s, director of the Division of Pediatric Surgery and vice chair at the Jim and Eleanor Randall Department of Surgery at Cedars-Sinai.

To fix Brandon’s sunken chest wall, Kim, in collaboration with thoracic surgeon Nguyen Minh Le, MD, performed a minimally invasive procedure that involved creating two small incisions on either side of the chest. A thin, strong titanium bar was scooped underneath the breastbone and muscle, lifting and supporting the sternum and chest wall.

Kim said he placed two bars to spread out the pressure. The bars will stay in place for three years until the chest wall has set in its corrected position.

“My chest doesn't have that indent that it had. It's just straight. And it's like, I feel normal now,” Brandon said.

Kim also performed cryoablation, or freezing of the chest nerves that transmit pain signals to the brain, for pain control after surgery.

“It means kids need far less narcotics for pain after the surgery,” Kim said. “They are out of the hospital in one to two days as opposed to five to seven days.”

Brandon isn’t completely out of the woods. He will always have Marfan syndrome, which means he will need to remain vigilant for other associated complications, especially heart and eye issues related to the condition.

But Brandon and his mother are thrilled with the remarkable results the surgeries yielded and grateful for the multidisciplinary team of specialists who jumped on board to care for him.

“We want doctors who will carry on his care after he turns 18,” Brandon's mother said. “Cedars-Sinai is the best place for that. We have all the specialists he’ll need under one roof.”

Living Life to the Fullest

With successful surgeries and challenging recovery behind him, Brandon is back to being a teenager.

Today, at 15, he is doing the things he loves most—riding his motorbike, jumping on trampolines and living life to the fullest.

“Being able to do those things again feels amazing,” Brandon said. “I don’t feel like I’m limited by my condition anymore. I feel like I can do whatever I want.”

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

Sixteen-year-old Rishee Ray is making history at Cedars-Sinai as the first pediatric patient to undergo halo-gravity traction ahead of spinal surgery.

Rishee has spent most of his life in a wheelchair due to a condition known as spinal muscular atrophy, a group of inherited diseases that affect the muscles responsible for voluntary movement in the body. 

The condition caused Rishee to develop severe scoliosis, with a 135-degree curve in his spine that was compressing vital organs and impairing his ability to sit upright. Additionally, he developed severe kyphosis, another dramatic curve from the side of his spine.

“When we looked at the right side of the chest, we could see his ribs literally stacked on top of each other, causing severe restrictive lung disease,” said Kenneth Illingworth, MD, pediatric spine surgeon at Cedars-Sinai Guerin Children’s. “Not only that, but there was also severe shoulder imbalance and coronal imbalance when he was sitting down.”

Illingworth said that to correct the extreme curvature in Rishee’s spine, spinal fusion surgery was the best option. However, because the curvature was so severe, surgery would have to wait while Rishee underwent a different treatment.  

“When you have curves that are that large, it makes it extremely challenging to operate on,” said Illingworth. “It also makes it extremely dangerous to the spinal cord.”

As a prelude to surgery, Illingworth recommended halo-gravity traction, a method that gently stretches and straightens the spine using a lightweight metal ring or halo that is attached to the skull with small pins.

Once the halo is in place around the head, it is attached to a pulley system, and weights are gradually added to slowly straighten the curved or compressed spine.

Most halo-gravity traction procedures on children last between three and eight weeks. For Rishee, it was a five-week process.

“At first it was difficult; it was this new thing on my head, but I got used to it,” said Rishee.

Pooja Ray, Rishee's mother, provided constant support, staying by Rishee’s side day and night, sleeping alongside him at Cedars-Sinai Guerin Children’s.

“We’ve been in the hospital for 40 days, but we have a purpose, so I don’t give my comfort that much of a thought, my goal was more important,” Pooja said.

The process ultimately yielded remarkable results.

Halo-gravity traction reduced Rishee’s curvature by half, decreasing it from 135 to approximately 70 degrees. And the straightening gave Rishee an additional three inches in height.

“I know it looks barbaric, but trust me, it’s one of the best procedures when you have to do corrective scoliosis treatment,” said Pooja.

After the halo traction device proved successful, Illingworth proceeded with the spinal fusion surgery, providing Rishee with relief from the severe lung compression he had been enduring and improving his daily comfort in his wheelchair—a critical element of his everyday life.

With the successful surgery behind him, Rishee can now sit upright, igniting a newfound sense of hope and optimism for his future.

“I feel more confident,” said Rishee. “I am able to control my neck and body better and can hold my head up and sit up straight without any external support.”

Rishee, who divides his time between India and Los Angeles, is back to his hobbies of swimming and painting and is pursuing higher education. He feels tremendous gratitude to his care team at Cedars-Sinai and to his mother.

“My mom was a great support, both emotionally and physically,” said Rishee. “Without her, this couldn’t have been possible.”

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