Lee la historia de a Amaia en español
In January 2024, Amaia’s family brought their two-year-old daughter to the ER at Nemours Children’s Hospital in Florida after noticing staring seizures. Staring seizures are a type of short focal seizure, during which a child will stare blankly, confused or lose awareness of their surroundings, often without any noticeable symptoms.
Her mother Stefanie remembers the exact day: “Amaia started bleeding through her nose and was behaving in a way that was not her normal, such as turning/looking to her left side in a very strong way and not moving – even turning purple [blue]. Then we decided to take her to the ER at Nemours.” That visit revealed a life-changing discovery: a brain tumor. The impact was immediate. “The impact of this news on our lives was extremely strong. I had to stop working to care for Amaia, take her to the doctor’s appointments, etc.”
From the moment they arrived, the family felt they were in the right place. Amaia’s care team, including Dr. Satyanarayana Gedela and his team , worked closely to ensure the best outcome possible. “We definitely describe Nemours as the best hospital, no doubt, that we could have visited. The doctors and nurses are all excellent. The way they treated Amaia and us as parents was great. The love, patience, respect, understanding, and professionalism they all give to families is outstanding.” With a plan that included surgery and medication, Amaia was given a path toward recovery.
“When I first met Amaia and her family for management of her epilepsy, she was having multiple seizures a week and visited ER once every month or alternate months. She was delayed in her language and social skills. She was having side effects from her medications including weight gain. As she failed two well-tried anti-sizer medications, we decided brain surgery to remove the seizure making area is the best option. We did extensive pre surgical workup followed by opening her skull and implanting electrodes on her brain to identify the seizure focus by capturing her seizures and stimulating her brain to confirm the seizure focus. Once we were 100% certain of her seizure focus, Dr. Olavarria safely removed her seizure focus and tumor. She tolerated the procedure well. She became seizure free soon after her surgery and we were able to wean her anti-seizure medications. She also got better in her language and social skills. It felt like she was a different child, happy, talkative, and socially more interactive. We are glad we could change her and her family’s life by making her seizure free and without medications. It is important we do these procedures early to protect the brain from seizures and allow it to develop appropriately.”
Her surgery was a success, and Amaia’s progress afterward amazed her family. “As a mother, I feel extremely happy and lucky to have found Nemours. My daughter is in the best hands possible. She has made a speedy recovery and nowadays she is progressing in her daily activities, which have not happened before.” Seeing her daughter regain her strength and abilities brought relief and gratitude beyond words.
The family now plans to “bring her back annually for her follow up appointments” as Amaia continues “living a normal life as a young girl.” Her mother offers heartfelt advice to other parents: “I would say to bring your children to Nemours if you are concerned for their health, no doubt. I know you will not regret it.” She adds, “Nemours changed our lives. Thanks to each nurse, doctors, and hospital staff for all their love and empathy. Special thanks to Dr. Gedela and Dr. Olavarria for giving us back, completely healthy, our Amaia. God bless you always.”
