Ellia’s Journey With Agenesis of the Corpus Callosum
February 03, 2026
When Sarah and Ryan went in for their 20‑week ultrasound, they expected a routine check. Instead, they learned their baby, Ellia, had agenesis of the corpus callosum, a rare congenital condition where the fibers (corpus callosum) that connect the right and left brain don't develop. It was a moment filled with fear and uncertainty, but it also marked the beginning of their relationship with our pediatric neurological specialists.
They were referred to Monica Arroyo, MD, a pediatric neurologist at Joe DiMaggio Children's Hospital. Dr. Arroyo recommended an MRI after birth to better understand Ellia’s brain structure. That scan revealed multiple arachnoid cysts, prompting the family to meet Amanda Kwasnicki, MD, a pediatric neurosurgeon whose skill and compassion would soon become central to Ellia’s care.
Expert Pediatric Neurosurgery for a Fragile Newborn
At just three months old, Ellia needed her first brain surgery to address the cysts. Dr. Kwasnicki carefully explained the imaging, the surgical approach, and the delicate angles required to safely drain the cysts without damaging surrounding structures. Because the cysts were attached, they could not be removed; instead, Dr. Kwasnicki opened them to allow fluid to flow freely and relieve pressure on Ellia’s developing brain.
It was a very scary time, but Dr. Kwasnicki and her team did a really awesome job explaining the imagery of the cysts and what to expect during and after the surgery.
The surgery went smoothly, and her parents were kept updated throughout, receiving real‑time notifications and reassurance from the surgical team. When the cysts began to grow again, Ellia underwent a second surgery. Once again, the procedure was successful, and her parents were grateful for the thoughtful placement of the incision, hidden within her hairline.
Navigating Seizures, Infantile Spasms, and a Complex Diagnosis
Following surgery, Ellia began experiencing infantile spasms, a type of seizure that required ongoing evaluation. She underwent EEGs, genetic testing, and assessments from multiple specialists, including endocrinology, gastroenterology, and neurology. After months of careful monitoring, Ellia was diagnosed with Aicardi syndrome, a rare neurologic disorder that occurs primarily in females with agenesis of the corpus callosum.
We like seeing, speaking, and listening to all the specialists’ explanations. All the questions we have, they're more than willing to answer anything, no matter how repetitive.
Dr. Arroyo guided the family through treatment options, medication adjustments, and long‑term planning. With her support, Ellia’s seizures stabilized, allowing her care team to gradually extend the time between follow‑up visits.
A Full‑Circle Approach to Therapy, Support, and Daily Care
Ellia’s condition affects her muscle tone, mobility, and development, so her weekly schedule is filled with therapies: occupational, physical, feeding, speech, vision, and Florida's Early Steps Therapy services. Her parents work closely with therapists to learn how to hold her, support her posture, and encourage safe movement.
They also appreciate the hospital’s child‑centered approach to imaging. Thanks to the MRI team, and a beloved staff member named Gordon, Ellia has never needed sedation for her scans. The “rock and feed” technique, warm blankets, and patient‑centered pacing help her stay calm and still during imaging.
Why They Always Return to Joe DiMaggio Children’s Hospital
Although the family lives in Boynton Beach and has visited hospitals across Florida and out of state, they always choose to return to Joe DiMaggio Children’s Hospital. The staff knows Ellia’s history, understands her needs, and treats the family with compassion and respect. Even during emergency visits, the team reviews videos uploaded through MyChart, collaborates quickly, and makes the parents feel heard and supported.
A second opinion at a nationally ranked hospital confirmed that Ellia was receiving the right care and the right treatment plan at Joe DiMaggio. For her parents, that validation reinforced what they already knew: They were exactly where they needed to be.
Today, Ellia continues to grow, learn, and make progress with the help of her dedicated care team. Her parents credit Dr. Arroyo, Dr. Kwasnicki, and the entire staff at Joe DiMaggio Children’s Hospital for giving their daughter the best chance at a healthy, supported future.
“We’re definitely at the right place for our daughter, her needs, and her care. They saved our little girl.”
We've Got the Spine, Back, and Nerve to Care for You
Memorial Healthcare System delivers comprehensive, lifelong neuroscience care for adults at Memorial Neuroscience Institute, and children at Joe DiMaggio Children's Hospital. Patients with the most severe neurological and traumatic spinal injuries receive rapid, coordinated care at the Level 1 Trauma Center at Memorial Regional Hospital, while those with complex seizure disorders benefit from the nationally recognized Level IV Epilepsy Center and dedicated Epilepsy Monitoring Unit. Memorial also operates two Comprehensive Stroke Centers, ensuring the highest level of stroke diagnosis, intervention, and recovery support. Together, these programs create a seamless, system‑wide network of world‑class neurosurgical care, rehabilitation, and compassionate support for every patient and family.
Ellia and Her Parents Journey
View photos of Ellia and her parents, Sarah and Ryan, on their journey with rare pediatric neurological disorders.