Ian’s Journey with Rare Pediatric Disease
It began like any other day for the Perez family of Cape Coral, Florida. Ismary Perez drove her son Ian, age 7, to school and headed to work on Nov. 6, 2024. But a short time later, she received a call from the nurse letting her know that Ian was on his way to the local children’s hospital after vomiting and fainting at school.
When Ian arrived at the emergency room, doctors quickly discovered a brain bleed. They determined he would need an angiogram, a procedure to examine the size and shape of his blood vessels, to decide the best course of action. Since the hospital was not equipped to conduct the test, Ian was flown to the Muma Children’s Hospital at Tampa General Hospital (TGH) via one of its five Aeromed helicopters, which are outfitted with the most advanced pediatric life support equipment.
Tampa General is home to the only children’s hospital in the region with the technology and expertise to perform angiograms on pediatric patients, in addition to treating those with complex brain conditions. The test confirmed that Ian’s brain bleed was a result of an arteriovenous malformation (AVM) – a dangerous malformation of the brain. While an AVM is rare in children, it tends to rupture more frequently in pediatric patients compared with adults.
Doctors believe Ian was born with an AVM, which can interfere with the delivery of blood, oxygen and nutrients to vital brain tissue leading to symptoms such as headaches and seizures and increasing the risk of rupture and bleeding. AVM surgery is considered to prevent or address these issues by closing off abnormal connections between blood vessels.
The nationally renowned cerebrovascular team at Tampa General has a high success rate in treating AVMs, including complex and high-grade blood vessel abnormalities. To help ensure the best possible outcome, a customized treatment plan based on the size and location of the AVM and other individual factors is developed for each patient.
“From the onset, our team was committed to delivering cutting-edge, individualized care that would ensure the best possible outcome for Ian, when faced with this rare and challenging condition,” Dr. Kunal Vakharia, the neurosurgeon who treated Ian at Tampa General. “Following extensive discussions with the Perez family, we took a multidisciplinary approach to treatment by combining advanced endovascular and surgical techniques to help block the blood flow, which we believe was the best path toward recovery for Ian.”
A full recovery can often take up to six months, but Ian was discharged from the hospital in less than two weeks. He continues to impress his team of physicians who the Perez family credits for his remarkable improvement.
“Though AVMs are rare, the Muma Children's Hospital at TGH has treated the brain disease frequently due to the availability of their highly specialized team approach. As a result, Ian received the best care possible in managing his intracranial hemorrhage due to AVM and we have been delighted with his excellent recovery,” said Dr. Sunita Bhandare, Medical Director of Pediatric Critical Care Medicine, Tampa General Hospital and USF Health Morsani College of Medicine.
Typically a very active 7-year-old, Ian is temporarily restricted in terms of physical activity as he continues to heal. Following the completion of his physical and occupational rehabilitation program, he remains under physician care to monitor his recovery and determine the appropriate next steps in his continued treatment and care.
“Every single Tampa General team member who cared for Ian supported us with patience, compassion, knowledge and dedication, guiding us through the most difficult time of our lives. There was so much happening, but they always took the time to explain every step — what they were doing, how and why,” said Ismary Perez, Ian’s mother.
In particular, she credits Roberto Velasco, a pediatric ICU nurse at TGH Muma Children’s Hospital, who consistently supported Ian and his family even after his shift was complete — from taking him on his first walk out of the pediatric unit to explaining what to expect throughout the recovery process to arranging for Ian to meet the Aeromed team who cared for him during transport to Tampa in addition to a personal tour of the aircraft.
“Through the most challenging time of our lives, the team at Tampa General wrapped us in knowledge, compassion and unwavering support. They didn’t just treat Ian. They cared for our whole family, guiding us with patience and heart,” said Ismary Perez. “Words like remarkable, miracle and incredible will always remind us of Ian’s journey, and we will forever be grateful to the heroes who made his recovery possible.”