A 15-month-old boy who was born with a rare condition is home from the hospital for the first time since his birth last April.
"I'm so proud of him and grateful to be home," mom Jackie Rocco, 42, told ABC News.
Anthony was born at 34 weeks and five days via emergency C-section on April 16, 2025, according to Rocco.
Rocco, who works for ABC News' parent company, The Walt Disney Company, said she and her husband, Anthony Troiano, went through multiple rounds of in vitro fertilization before welcoming Anthony.
Rocco said she was diagnosed with preeclampsia, or high blood pressure, near the end of her pregnancy.
After his birth, Rocco said one hospital staffer noticed that Anthony was exhibiting a concerning symptom.
"One amazing nurse just saw a little sign and said he might be having a seizure," Rocco said. "She just had this, like, gut instinct, and I'm so grateful to her because it made things happen a lot quicker for us and start dealing with things."
After an electroencephalogram, or EEG testing, Rocco said Anthony was diagnosed with a rare epilepsy condition called Ohtahara syndrome, also known as early infantile epileptic encephalopathy or EIEE. The syndrome, which is characterized by multiple daily seizures, impacts brain health and can lead to various disabilities.
Dr. Dennis Keselman, a pediatric neurologist at Blythedale Children's Hospital in Valhalla, New York, and one of Anthony's doctors, told ABC News that Ohtahara syndrome cases are “ultra rare” and occur in about 1 in 100,000 births. Oftentimes, doctors don’t know why they appear at all.
"There's many different causes to Ohtahara syndrome. Many of them are genetic or at least thought to be genetic,” Keselman said. “And Anthony had actually many different workups for this and at the end of the day, no diagnosis or no underlying cause was actually found despite an extensive workup."
Anthony was transferred to multiple hospitals after birth, including Blythedale in November 2025, where he received multiple treatments such as occupational therapy and physical therapy. He was also given anti-seizure medications.
Today, Anthony requires 24/7 care and has a tracheostomy for long-term breathing support and a gastrostomy tube for feeding. Despite it all, Rocco said he is “very smiley and just happy.”
“He's an amazing little boy. So he makes it very easy to just fight with all I have, because if he's fighting, I’m fighting,” she said.
“This diagnosis does not define him,” she added. “It does not make him any less than. He is here for a reason.”
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