Stephanie has lived most of her life at Elizabeth Seton Children’s Center, starting her journey there at just three months old. Since she was born, she’s faced immense medical challenges, including spina bifida, Arnold-Chiari malformation, neurogenic bladder, and hydrocephalus. Despite enduring numerous painful and high-risk surgeries, Stephanie’s courage and love for music and art have helped her through her toughest moments. Now, at 26, she is a vibrant young woman, known for her stylish outfits and exuberant personality. As Elizabeth Seton Children’s International Spokesperson, volunteer, and an Associate of the Sisters of Charity of New York, Stephanie advocates tirelessly for young adults with complex medical needs who age out of pediatric care and face uncertain futures. She is a role model, demonstrating that life is full of possibilities. Stephanie is now focused on raising awareness for a future young adult center to ensure young adults with medically complex conditions like her can receive the care they need to reach their fullest potential.

When four-year-old Mayia stopped using her right side, her parents were immediately concerned and took her to Children’s Mercy Kansas City. There, Mayia’s medical team discovered she had a tumor with two cysts pushing on the left side of her brain, interfering with her right-side mobility. The tumor, a metastatic ganglioglioma, proved too difficult to remove through brain surgery and did not respond to chemotherapy. Mayia’s doctor wanted to try a new drug combination, but the medications weren’t on the market yet. Her dedicated care team worked hard to petition the drug company and the FDA for approval. Once they were approved, Mayia could use the new medications as part of a research trial. Mayia’s tumor responded well to the treatment, and she finally started feeling like herself again. The FDA recently approved the drugs for public use, so Mayia and her family can now receive the prescriptions from the pharmacy. Mayia has been on the medications for over a year, and it’s fully halted her tumor growth! In another year, her care team will taper her off the medications and continue to monitor the tumor’s response. Today, she’s an outgoing six-year-old who loves playing outside, going on walks, and hanging out with her older brothers.

Just days after birth, doctors diagnosed John Josiah with cerebral palsy, epilepsy, and scoliosis. They told John J.’s parents that he would never be able to walk, talk, or even eat on his own. However, when the family moved to Texas, their luck took a turn. John J. began care at the Driscoll Children’s Hospital, and it gave more hope than they had ever been given. Years and years of treatment, combined with John J.’s incredible determination, led to what doctors said to be impossible. John J. walked, started talking, and he began to live a fuller life. Now, at 18 years old, John J. has reached another momentous milestone: walking the stage at his high school graduation! Through it all, his bright smile has never faded. Thanks to his dedicated care team and John J.’s resilience, he has grown into a strong young man who continues to defy all expectations.

When a 22-week routine sonogram detected an irregularity in Oaklee’s heartbeat, a care team referred the family to John R. Oishei Children’s Hospital in Buffalo, NY. They discovered that Oaklee had supraventricular tachycardia, which causes the heart to beat faster than usual. For eight days, doctors worked hard to regulate his heartbeat. However, once his heart was stabilized, the clinicians found that Oaklee’s mother had placenta accreta, which often causes premature delivery. For the next twelve weeks, a dedicated team care team closely monitored her and the baby’s health and soon found that Oaklee also had a cleft lip. Once again, the team at Oishei Children’s Hospital stepped up to guide the parents through his new diagnosis. At 34 weeks, doctors determined it was time to deliver Oaklee. While Oaklee’s mother was nervous about being under different care than her routine OB/GYN, the dedicated team held her hand through hours of surgery and a 13-pint blood transfusion. After 19 days in the NICU, Oaklee went home. In 2021, Oaklee underwent surgery to receive his forever smile, and today he is thriving! His parents are forever grateful for the incredible care and compassion they received during every step of their health journey.

Mikari was just 2-years-old when she visited Loma Linda University Children’s Health for an enlarged heart. Her doctors determined she had heart failure and diagnosed her with dilated cardiomyopathy, a condition that weakens the heart muscle and hinders its pumping ability. At first, Mikari’s treatment involved medication and monitoring, but two years later, doctors determined that she needed a new heart. While she was waiting for a heart transplant, her team gave her a mechanical ventricular assist device to keep her heart pumping. As her care team continued to monitor her, they set up scavenger hunts, dance parties, and fun activities to keep her busy during the stressful waiting period. Then, five months later, a heart became available. The next day, Mikari underwent a successful surgery. After a few weeks of additional monitoring, Mikari was discharged. Today, she is a vibrant six-year-old girl who loves school and dreams of traveling the world. Mikari continues to visit Loma Linda University Children’s Health for routine check-ups and is thriving with her new, healthy heart.

When Samantha first started kindergarten, her mom, Vicki, noticed she wasn’t acting like herself. Her unusual behavior led to an emergency room visit where doctors discovered her glucose level was dangerously high. Samantha was diagnosed with Type 1 diabetes, and within months came another difficult diagnosis: celiac disease. Samantha, however, stayed strong. Under the care and guidance of her team at Dayton Children’s Hospital, Samantha has learned to manage her life-altering conditions with extraordinary resilience. Throughout the seven years of her health journey, she has become a pro at continuous glucose monitoring and mastered the four daily insulin shots and strict demands that a gluten-free lifestyle requires. Her family rallied behind her, helping her carefully plan every meal and taking every step possible to prevent cross-contamination. Through it all, Samantha’s bright spirit has never dimmed. She proves that even in the face of complex health challenges, you can live a full, joyous life.