Six-year-old Mia is a vibrant, outgoing little girl who lights up every room she enters. Born with several rare and complex medical conditions, Mia has already undergone more surgeries than many will face in a lifetime. Her resilience, boundless energy, love for singing and dancing, and dreams of becoming a nurse (or the next Taylor Swift!) inspire everyone around her.
Mia’s medical journey began the day she was born, bringing with it a unique set of challenges. Diagnosed with Pierre Robin Sequence, complete tracheal rings, infantile scoliosis, hip dysplasia, ulnar dysplasia, an ectopic pelvic kidney, and clubfeet, Mia quickly showed she was ready to tackle whatever came her way.
“Mia was immediately transported to Nemours Children’s Hospital, Delaware from our local hospital right after she was born,” shares her mother, Janelle. “She was in the NICU for 65 days. I drove back and forth, from Wildwood NJ to Wilmington DE, every single day for those 65 days.”
Mia’s care at Nemours Children’s spans a wide range of specialties, including various areas of orthopedics, plastic surgery, cardiology, general surgery and more. Over the years, she’s worked closely with many dedicated providers, including Dr. Shah, Dr. Thacker, Dr. Franzone, Dr. Caterson, Dr. Ty, Dr. Pizarro, Dr. Stekolchik, and Dr. Bhatnagar.
“Mia is very well known in the orthopedics department,” Janelle shares. “Every member of her care team is out-of-this-world talented, but even more importantly, they’re kind. We honestly cannot put into words how grateful we are for all of her doctors, especially Dr. Shah!”
This past summer, Mia underwent halo gravity traction and growing rod surgery with Dr. Shah and members of the orthopedics team. Despite the challenges of a lengthy hospital stay, Mia found joy in little moments, like participating in Wednesday Bingo with the child life specialists. “They made our stay so fun and special,” Janelle adds.
Mia’s journey includes several significant surgeries that highlight the complexity of her care. One of these included a cervical fusion, to stabilize her upper neck by fusing the first and second cervical vertebrae. Before this procedure in 2019, she was referred to the Nemours Children’s Cardiac Team for an emergency tracheal reconstruction so she could have a stable airway, underscoring the multidisciplinary nature of her treatment.
Additionally, Mia has undergone palate repair and mandibular distraction surgery on her jaw with Dr. Caterson and the plastic surgery team. “Mia’s case is a great example of how we tailor treatment to each individual patient,” shares Dr. Caterson. “Initially, she was scheduled for a cleft palate repair, but when we evaluated her unique airway considerations, we adjusted the plan. We prioritized her airway by performing mandibular distraction first, which created a safer path for her palate closure. This kind of personalized care is essential for complex patients like Mia.”
To ensure her mobility and comfort, she has also a reconstruction of her dislocated hip. Born with one pelvic kidney, Mia visits nephrology to monitor her kidney health. She also sees pulmonology to watch her lungs and respiratory system, especially considering her scoliosis. Each of these interventions reflects the dedicated and coordinated care Mia receives from her care team.
“You’d never know she’s been through anything, especially not 18 or so surgeries,” shares Janelle. “Mia is the happiest, most outgoing, eccentric and loving child! She wants to be friends with everyone! A true to life social butterfly! She loves to sing, dance, perform, play Roblox, make TikToks, and hang out with her cousins! In fact, Mia has received such excellent care at Nemours, she wants to be a nurse when she grows up, or the next Taylor Swift!”
“Mia is an incredible young girl whose spirit, determination, and family support have carried her through so many challenging diagnoses and procedures,” shares Dr. Franzone. “It’s been amazing to see how far she has come since our team first met her at just two days old. Her journey highlights not only the collaboration within our Orthopedics department but also how our entire hospital comes together to manage complex cases while providing a close-knit, family-focused environment for patients like Mia and their parents.”
Reflecting on their journey, Janelle offers this advice to other families navigating complex medical care, “Perspective is everything. Count your blessings. Trust your doctors and care team, but also trust your intuition.”
As Mia continues to grow and thrive, her family remains forever grateful for the expert care and support they’ve found at Nemours. “We cannot rave enough about Nemours! They’re always so professional, kind and patient. Every aspect, from using the app to big surgeries, is top notch,” Janelle says.
On Rare Disease Day, Mia’s story serves as a powerful reminder of the strength of children facing extraordinary challenges—and the incredible care teams who help them shine.
