High school student uses scoliosis diagnosis to help others struggling in silence
Daisy Villena never anticipated that a single news report could dramatically alter the trajectory of her only child’s life. Her son, Chinno, had been enduring severe congenital kyphoscoliosis, a condition where all of the vertebrae in his spine were fused together. This medical anomaly left him with a pronounced deformity of the back and shoulders, causing not only physical discomfort but also internal complications, as vital organs such as his heart and intestines fought to function correctly. His condition severely restricted his participation in physical activities, fostering a sense of self-consciousness and prompting him to hide his spinal deformity by always carrying a backpack.
For years, Villena sought medical care for Chinno in their homeland of the Philippines, but her efforts went unanswered. Despite a surgical attempt when he was just 7 years old to insert rods into his spine, surgeons discovered that Chinno’s bones were too soft to support the titanium hardware. Following that failed intervention, the recommendation of a brace fell through due to what Villena described as a troubling “lack of attention and resources from the care team,” leaving both her and Chinno without viable treatment options.
In 2019, Villena chanced upon a poignant CNN report featuring a teen whose severe scoliosis was successfully treated by Dr. Lawrence Lenke, co-director of the Och Spine Hospital at NewYork-Presbyterian in New York City. Frustrated by the ongoing struggle her now 10-year-old son faced in accessing proper medical care, Villena made a courageous decision: to relocate to the United States in pursuit of specialized treatment for Chinno.
“With every consultation in the Philippines, it became increasingly clear that his case wouldn’t receive the attention or care it desperately needed,” Villena reflected. “After countless prayers, I resolved to move to the U.S. to find experts capable of rectifying his spinal issues and restoring hope for a better future.”
What is congenital kyphoscoliosis?
Scoliosis and kyphosis are both spinal conditions characterized by abnormal curvatures; scoliosis bends the spine sideways while kyphosis causes a front-to-back hunch. Congenital kyphoscoliosis occurs when an individual presents with both abnormalities simultaneously, a condition described by Dr. Joshua Bakhsheshian, a neurosurgeon at the Mayo Clinic, as “one of the most severe types of spinal deformities.” He emphasized that such cases are particularly challenging to treat effectively.
Patients afflicted with kyphoscoliosis often experience significant physical ramifications, including diminished lung volume and adverse effects on cardiovascular health. The condition can even threaten the integrity of the spinal cord, adding to the complexity of treatment.
Chinno’s condition was particularly severe; while average individuals possess a kyphosis measurement between 25 and 45 degrees, Chinno’s spine exhibited a staggering 140-degree curvature. Dr. Juan C. Rodriguez-Olaverri, director of pediatric spinal deformity surgery and early onset scoliosis at NYU Langone’s Hassenfeld Children’s Hospital, described this situation as “extremely, extremely severe.”
Traveling across the world for life-changing care
Villena was acutely aware that relocating to the United States would come with considerable challenges. However, in a fortunate turn of events, she discovered that her employer, a human relations department dedicated to recruiting for a U.S. government contracting company, was opening an office in Florida. In 2023, she was granted a work visa, leading to their life-changing move of over 9,000 miles.
Approximately six months later, Chinno and Villena arrived in New York City to consult with Dr. Lenke. Now 17, Chinno faced even greater complications due to the kyphoscoliosis, and untreated, his health risks could escalate, potentially impacting his ability to breathe properly.
Lenke, a veteran in the field with over 30 years of experience treating spinal deformities, established a comprehensive three-stage treatment protocol. The initial phase involved a technique known as payload gravity traction, wherein a ring was affixed to the patient’s skull; weight was gradually added to stretch the spine, preparing it for forthcoming surgical interventions.
After a month of traction, Chinno underwent his first reconstructive procedure, with a second operation following just two weeks later. Each surgery lasted about 10 hours; the interventions successfully unfused his vertebrae and straightened his spine. Villena was overwhelmed with emotion upon witnessing her son stand upright for the first time, expressing, “I was really crying. It was incredibly fulfilling to see him finally receive the treatment he deserved.”
The postoperative phase consisted of several months dedicated to physical therapy and rehabilitation, during which Chinno had the opportunity to relearn fundamental movements such as walking and standing. Upon returning to Florida, he blossomed socially, overcoming his previous shyness, forming friendships with classmates, and finally participating in the sports he had always yearned to play. Dr. Lenke assured them that Chinno was unlikely to experience any further spinal issues, allowing him to live what is expected to be a mostly normal life.
“Throughout my career, I’ve treated thousands of patients, yet Chinno truly stands out as unique,” remarked Lenke. “I attribute much of this success to Villena’s determination and commitment to getting him to a specialized center like ours. Their journey was far from simple, yet they maintained a positive attitude in the face of adversity. They never faltered.”
More from CBS News
How did Daisy Villena overcome the challenges of relocating to the U.S. while ensuring the best care for Chinno?
Ablished a comprehensive treatment plan for Chinno, combining corrective surgery with post-operative care tailored to his specific needs.
In an exclusive interview, we spoke with Daisy Villena about her journey, the challenges they faced, and how her experience has inspired her to help others who may be suffering in silence.
**Interviewer**: Daisy, thank you for joining us today. Your story is truly inspiring. Can you tell us what it was like for you and Chinno before you arrived in the U.S.?
**Daisy Villena**: Thank you for having me. Life in the Philippines was extremely difficult for both Chinno and me. Despite the many medical consultations, we faced repeated disappointments due to a lack of resources and expertise. Chinno’s condition often made him feel isolated and insecure. He constantly hid his back with a backpack, and it broke my heart to see him suffer in silence.
**Interviewer**: That sounds incredibly challenging. What was the turning point that made you decide to move to the United States?
**Daisy Villena**: It was after watching the CNN report about the teenager who had similar issues and received successful treatment from Dr. Lawrence Lenke. It struck me that there might still be hope for Chinno. I realized I couldn’t wait any longer for help that may never come in the Philippines. After countless prayers and staring into the reality of his health condition, I decided it was time to take a leap of faith and move to the U.S.
**Interviewer**: Relocating to another country is not easy. What were some of the challenges you faced during that transition?
**Daisy Villena**: There were many hurdles. First, we had to navigate the visa process, which was daunting. Fortunately, my employer helped me secure a work visa when they opened an office in Florida. However, moving 9,000 miles away from home meant starting fresh, and I worried about supporting Chinno not just physically but emotionally in such a big transition.
**Interviewer**: You mentioned the importance of finding a supportive community. How have you worked to help others facing similar struggles?
**Daisy Villena**: Having experienced Chinno’s battles and witnessing his perseverance inspired me to advocate for those suffering in silence. I’ve started to connect with local support groups and online communities where families can share their stories and seek help. I want to ensure no one feels alone in their journey with conditions like scoliosis or kyphosis.
**Interviewer**: What advice would you give to other parents who might be in similar situations?
**Daisy Villena**: Don’t give up on seeking the right care for your child. Research extensively, ask questions, and never hesitate to go beyond your local options. It’s crucial to trust your instincts as a parent—if you feel something is not right, fight for your child’s health and well-being. And always remember to seek support from others; you’re not alone in this.
**Interviewer**: Thank you, Daisy. Your advocacy and strength in the face of adversity are truly commendable. We wish you and Chinno all the best in the future.
**Daisy Villena**: Thank you so much for sharing our story. I hope it inspires others to speak up and seek the help they deserve.
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