Julia Vitarello is racing against the clock to save her child’s life.
Her daughter Mila’s symptoms began slowly: Though she was already used to hiking with her parents, Mila’s foot started turning inward when she was 3 years old, and she became more awkward. Doctors told her parents that could be normal. Then, she began repeating herself, or she wasn’t able to finish her sentences. “She’ll grow out of it,” they told Vitarello and her husband, Alek Makovec, an aerospace engineer.
Though she was worried about the changes in her daughter, “She was still functioning,” said Vitarello. “My friends told me, ‘You’re crazy! She’s fine!'”
But when Mila started leaning far down over her books or pulling them much closer to her face to read them, Vitarello began taking Mila from one doctor to the next. They tested Mila for autism, but that was not her problem. “I thought, ‘They’re just not getting it,'” Vitarello said. “All these people were telling us different things.”
By the time she was 5, Mila’s parents knew something was really wrong. She started doing a frantic, involuntary stepping movement with her feet until she would fall over, and her eyesight was blurry and she was checked for hallucinations or seizures. “No matter where I went, people had never seen her symptoms before. They couldn’t figure out what it was,” said Vitarello.
Up late one night searching the internet, Vitarello realized that Mila’s symptoms matched Batten disease — a rare, deadly disorder. She tried to get her an appointment with a neurologist at a local children’s hospital the next day, but the doctor was booked for months. Vitarello told her husband they were going to have to take Mila to the emergency room. “We knew they were never going to let her leave the hospital with her symptoms,” Vitarello said.
Mila was formally diagnosed with Batten disease this fall, and her condition has quickly declined. On her sixth birthday, November 5, she could still see; now, she is 100 percent blind. She has a hard time walking or talking, but her spirits are still good. “She’s still Mila,”…