A dying child, a mother’s love and the drug that changed medicine

Mila Makovec loved the great outdoors. Born in November 2010, she grew up on the outskirts of Boulder, Colorado and was skiing by the age of two. Before her third birthday Mila would go on long hikes, preferring to make her own way rather than be carried in a baby backpack. Shortly after her third birthday Mila started rock-climbing. “This is not just a mom boasting about her child,” says her mother, Julia Vitarello. “She was really outgoing and advanced. But then,” she adds, “I started noticing things.”

Before she turned four, Mila had started walking with an inturned foot. At the doctor’s surgery there was little alarm. Mila was diagnosed with tibial torsion – an inward twisting of the shin bones that is relatively common among toddlers. But, for Julia, the diagnosis didn’t add up. Over the coming months Mila became clumsier and clumsier. She would stumble and fall; her speech, previously eloquent and exuberant, became slow and staccato. In 2015, by the time Mila was five, doctors started using the word ‘delay’ – suggesting that she had been born with something that was hindering her development. “That didn’t make sense,” says Julia. “Mila was advanced.”

The hunt for a diagnosis was arduous, encompassing more than 100 visits to doctors and therapists. Many doctors who assessed Mila commented on how developmentally advanced she was, despite her ever-growing list of symptoms. Then came the suggestion that maybe, just maybe, she had something incredibly rare. Julia started carrying around a piece of paper to note down any symptoms of a potential neurological condition. “First it was stepping on toys and breaking them. All the toys in our house were broken. I would ask her, ‘Mila, what’s that in the corner?’ and she would say, ‘Oh, it’s a butterfly.’ The next day I would ask again and she would look away like she didn’t know.” Suspecting that Mila might have a vision problem, Julia took her to an ophthalmologist and an optometrist, both of whom said she seemed fine. “They also told me to chill out,” Julia says.

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