Miracle Myles: From Super Tiny to Superhero

Myles came into the world tiny but mighty – weighing only 1 lb, 13 oz. His family nicknamed him “Miracle Myles” for overcoming many challenges while in the Neonatal Intensive Care Unit (NICU) at Orlando Health Winnie Palmer Hospital for Women and Babies. Today, at 10 years old, Myles is being treated for epilepsy at Orlando Health Arnold Palmer Hospital for Children.

When Myles was discharged from the NICU, he averaged three to five appointments, with up to seven Orlando Health Arnold Palmer specialists, per week. Due to the overwhelming schedule, Myles and his mom, Katie, in her words, “had to schedule marathon doctor days.” At this stage of his young life, Myles was only 4 lbs. and immunocompromised, so visiting multiple physician offices increased his risk of exposure to germs. “Constant doctors’ appointments, in and out of several offices a day, multiple days a week, with a relentless fear of your child getting sick; this was our life for two years,” recalls Katie.

At 18 months old, Myles was diagnosed with drug-resistant epilepsy. In the beginning, Myles was experiencing up to 20 seizures per day and the number of specialist appointments increased. As part of his treatment, Myles began a ketogenic medical diet and underwent surgery to implant a Vagal Nerve Stimulator (VNS), which operates as a type of pacemaker for the brain. Since his operation, Myles tells everyone he has a device “like a superhero.”

Life for kids like Myles will soon look much different. Bringing 30 pediatric specialties and services together under one roof, the Orlando Health Children’s Pavilion will transform the model for pediatric care in Central Florida. When a child experiences an injury, illness or is diagnosed with a chronic or complex medical condition, the entire family is impacted. To manage the necessary doctor visits and therapies, families often spend countless hours in transit to ensure their child receives expert care. We are on a mission to minimize the disruption of childhood and the stress of caring for a child with unique healthcare challenges.

Katie looks forward to what future care for Myles will look like, saying “When Myles is in the hospital, it will be comforting to know all his specialists will be across the street at the Orlando Health Children’s Pavilion and can help make decisions on his care immediately. Next year, Myles will need to undergo another surgery to update his VNS and as he transitions from inpatient to outpatient, it will be much easier for us to connect with his physicians.”

Because of the care Myles received at Orlando Health Arnold Palmer, he is a happy, superhero-loving 10-year-old. Every day, he shows his friends and family how to enjoy life to the fullest, whether dancing to his favorite songs or dressing up in superhero costumes. He loves creating a community around him; even at his appointments, he makes friends and tells them it will all be okay.