“Half an hour after she was born, she was strong enough to hold onto my finger, and I could almost pick her up off the bed,” says Boulder, Colorado, climber Alek Makovec, of his daughter Mila, now 6.
I first met Alek through our then officemate and friend Julia Vitarello, at the time Alek’s girlfriend. Today, the pair, both climbers and avid outdoorspeople in the multi-sport mode, are married and live north of Boulder with Mila and her brother, Azlan. Climbing Magazine shared office space with Vitarello in the Holiday neighborhood of north Boulder from 2007 through 2009, and our “huge” staff of me, my wife (associate editor), and Justin Roth (senior editor) became friends with the couple. At the time, Vitarello was running the American branch of an Italian business that sold timing equipment for professional sporting events. We would hear her on the phone, making rapid-fire business calls in the perfect Italian that is her and Makovec’s native tongue. We would all dine out together in our leisurely pre-kid era, and Vitarello got more and more into climbing as she dated Makovec, a lifelong climber, and frequented the Boulder Rock Club.
It’s been some time now, however, since they—or Mila—have been able to climb. In December 2016, after years of perplexing and worsening symptoms including speech and gait issues, Mila was diagnosed with Batten disease, an exceedingly rare neurodegenerative condition that robs children of their sight, ability to walk, ability to talk, ability to swallow, and eventually life. The disease also causes seizures. Though there is no known cure, trials for other types of Batten (the disease comes in many variants) have successfully halted the disease—it’s been such a huge success that the FDA in late April approved the drug, Brineura, used in one trial. Because Mila’s type of Batten is different than the one Brineura would treat, the foundation started in her name, Mila’s Miracle Foundation to Stop Batten, is looking to launch a new trial of cutting-edge gene therapy delivered directly to the brain. “Our trial offers hope not only for Mila and other children facing her type of Batten, but will help advance gene therapy as a way of correcting genetic diseases like Alzheimer’s and Parkinson’s that affect millions of people around the world,” says Vitarello. Mila’s parents are working feverishly to raise the $4 million they need for this therapy. So far, they have amassed $500,000, with efforts ongoing, including online fundraising and local benefits.
I remember first meeting Mila around age one at Turley’s, a family restaurant in Boulder. Her giant smile split her face and her dark eyes lit up as she shoved bread by the fistful into her mouth. She’d ridden over with Alek on his bike, perched in a baby seat affixed to the handlebars. It was a perfect early-autumn evening, with thunderstorms having pushed out east to be backlit by golden sunset. My wife was six months pregnant, and we quizzed Alek and Julia about their lives as new parents. We would soon have two children ourselves. We would soon know what that meant. When a child falls ill, it is a pain like no other; you would gladly give your life to ease their suffering.
“When Mila was a toddler, she was a climber, she was a hiker, she was a runner,” says Vitarello. Her daughter was very active, a natural-born climber who would pull herself up on anything vertical in the house and start clambering: chairs, couches, the walls of her crib—it was all part of Mila’s playground. Her father once had Mila demonstrate her fierce dead-hang skills off the back of a couch for us; at the time, she was only two.
As Mila grew into toddlerhood, around age three her parents started to notice stuttering and gait issues. Mila would repeat phrases, and began to walk with her toes turned in. Around age four, they noticed vision problems: She’d hold her books very close to her face. At age five, Mila began to experience falling issues. Then, around age six, Mila experienced a sudden downturn; fully blind, she could now no longer play or climb as she once had. All along their journey, doctors had reassured the anxious parent that it was nothing—a neurological hiccup—and that these issues would resolve themselves in time. Batten, it turns out, is so rare that most physicians have never seen it in their practice. According to the National Institutes of Health, only 2 to 4 of every 100,000 live births in the United States will be children with Batten or related disorders.
As Mila’s condition deteriorated, her parents took her to Children’s Hospital Colorado, where they finally received a diagnosis: Batten disease. It came as a shock.
“What’s brought her so much happiness is playing with her toys and looking at her books and watching TV and playing with her brother, and suddenly it looked like she could no longer play…with anything,” recalls Vitarello. “It’s so hard to see such an outgoing little girl not be able to play with other kids and not be able to play with toys and not be able to watch Elmo anymore.”
Still, Mila’s face brightens into her trademark smile when you talk to her, she loves spending time with her family and playing with her younger brother, and she’s never far from her beloved Princess Elsa doll from Frozen. A local piano teacher has volunteered to give Mila free piano lessons, and many others are rallying to help, too. Mila is not alone her in struggle.
As climbers, we’ve had to learn how to cultivate grit, to get ourselves out of hairy predicaments when they come up, to live to climb another day. Yet sometimes we need help, too—from partners, from family, from community. We can’t always do it alone. If you have children yourself or are touched by this story, please visit stopbatten.org to donate. All donations go directly to the foundation.