Onyx’s journey began with challenges that most people can scarcely imagine. Yet today, he is a thriving little boy whose determination, combined with the unwavering advocacy of his mother and the support of his care team, has helped him make extraordinary progress.
Born at St. Luke’s Hospital at 36 weeks gestation, Onyx weighed just 5 pounds, 5 ounces. Immediately after birth, he was transferred to the Children’s Hospital of Philadelphia (CHOP) and admitted to the Neonatal Intensive Care Unit (NICU).
Doctors diagnosed him with complex gastroschisis, a birth defect in which a baby’s intestines develop outside the body, as well as Type IV intestinal atresia, a severe intestinal condition that required multiple surgeries. From the very beginning, Onyx faced a difficult medical journey marked by operations, lengthy hospital stays, and ongoing recovery.
He continues to receive Total Parenteral Nutrition (TPN), a specialized form of nutrition that bypasses the digestive tract while his intestines heal and develop. At six months old, Onyx received a gastrostomy tube (G-tube), which provided greater comfort and freedom of movement. Before then, he relied on a sump tube that passed through his nose and remained connected to wall suction equipment, significantly limiting his ability to move and explore his environment.
While the medical challenges were significant, one constant remained throughout every step of his journey: his mother, Julisa.
A Mother’s Unwavering Advocacy
From the moment Onyx entered the world, Julisa became his fiercest advocate.
She worked closely with doctors, nurses, therapists, and specialists, ensuring that every decision considered what was best for her son. She learned the complexities of his medical conditions, asked questions, sought answers, and remained actively involved in every aspect of his care.
Through surgeries, setbacks, and long days in the hospital, Julisa never stopped pushing for the resources, treatments, and supports that would give Onyx the best opportunity to thrive.
Her advocacy became a critical part of his success.
By staying engaged and informed, she helped ensure that Onyx received the interventions he needed to continue progressing despite the obstacles he faced.
While Julisa has led the charge in advocating for Onyx’s care, she has never done it alone. His father, Christopher, and older brother, Saint, have been by his side throughout the journey. Together, they have celebrated every milestone, supported him through countless medical appointments and hospital stays, and provided the loving, encouraging environment that has helped him thrive.
The Role of Early Intervention
Because Onyx spent much of his early life hospitalized and recovering from surgeries, he had limited opportunities to engage in the activities that naturally promote infant development.
When Early Intervention physical therapy services began, he was unable to sit independently, roll over, or crawl. Like many medically complex children, his developmental progress had been impacted by the amount of time spent focusing on recovery and healing.
That’s when physical therapist Sue Trinchere of Via became an important part of his journey.
Working alongside Julisa and Onyx’s healthcare team, Sue focused on helping him build strength, mobility, and confidence through individualized therapy sessions. Each milestone required patience, persistence, and teamwork.
Progress came one step at a time, but every accomplishment was meaningful.
Remarkable Progress
Today, Onyx’s achievements tell an inspiring story of resilience and determination.
After approximately eight months of physical therapy, he can now roll in both directions, sit independently without support, crawl, stand, and walk between supports.
He is currently walking with support and is very close to taking independent steps.
One of the most remarkable sights is watching Onyx move around with a small backpack that carries his tube feeding equipment. While many children his age carry toys or snacks, Onyx carries the medical equipment he needs to stay healthy. The solution, developed by his pediatric care team, allows him to move freely and participate in daily activities while continuing to receive essential nutrition. Today, the backpack has become a normal part of life for Onyx, who wears it confidently as he explores the world around him.
For a child whose earliest days were spent fighting through serious medical complications, these milestones represent tremendous progress. Despite the challenges he has faced since birth, he is now only slightly delayed compared to typical developmental milestones.
His growth reflects not only his own strength and determination but also the dedication of the many people who have supported him along the way.
Looking Toward the Future
Today, Onyx is a curious, active toddler who continues to surprise those around him with what he can accomplish.
His story is about far more than diagnoses, surgeries, or hospital stays. It is a story of resilience, perseverance, and hope. It is the story of a mother who never stopped advocating for her child, a father and brother who stood beside him every step of the way, and a team of healthcare professionals who believed in his potential.
While Onyx has already achieved milestones that once seemed unimaginable, there is still one exciting goal in sight: independent walking.
Julisa’s goal for her son is simple and meaningful. She wants Onyx to be able to walk independently so he can explore his environment, play freely, and experience the world with the confidence and curiosity that define him. His therapy team will know that goal has been achieved when he can stand without support, move himself from the floor into a standing position without assistance, and independently walk within and between rooms throughout the day.
That day is getting closer.
So far, Onyx has taken seven independent steps on his own. For many families, seven steps might seem small. For Onyx and those who love him, they represent almost two years of surgeries, recovery, advocacy, therapy, determination, and hope.
Each step is a reminder of how far he has come since those first days in the NICU. And each step brings him closer to a future filled with more independence, more exploration, and more opportunities to simply be a kid.
The road hasn’t always been easy, but Onyx continues to prove that incredible things can happen when courage, family support, expert care, and relentless advocacy come together. With seven independent steps already behind him, there is little doubt that many more are just around the corner.
