Susan Erler decided it was high time her granddaughter, Maia Gochez, see the beauty of the United States. She opened up a map and left it up to Maia to choose the destination. Maia pointed to a little island off the east coast: Cape Hatteras. After that, it was 12 days and 3,000 miles of adventure. From driving through the Appalachians to walking along the beaches, Susan and Maia never had a bad moment; never got too lost, never forgot what they had been through to get there.
The Long Road of Diagnosis
Maia's story begins eight years ago at Gillette Children’s Specialty Healthcare. Susan and her son Will, Maia’s dad, noticed Maia wasn’t walking easily, and brought her in to figure out what might be causing the problem. “At that appointment, they examined Maia and asked endless, seemingly random, questions about her,” says Susan, “How is her appetite, how is her energy level, what is her mood like?”
In the course of this detective questioning, the doctors started to pull together Maia’s diagnosis: agenesis of the corpus callosum (ACC). “It was hard,” Susan said. Her granddaughter—healthy just a second ago—puttered around while a lifelong condition dropped into Susan’s lap.
That day, Susan learned that Maia was born without her corpus callosum—the part of her brain that connects the two distinct brain hemispheres. This diagnosis brought a future of symptoms like vision impairments, poor coordination, learning disabilities and even a possibility of seizures.
The appointment also revealed large ventricles in her brain—an abnormality that could lead to hydrocephalus, or too much pressure in the brain. A few years later, when Maia was almost 5, Susan finally received an official cerebral palsy diagnosis for Maia. With three conditions to contend with, Maia, Susan, Will and the team at Gillette decided to bring that number down.
In 2010, Gillette neurosurgeon Patrick Graupman, MD, performed a brain surgery called a third ventriculostomy on Maia to prevent pressure from building in her brain. During the surgery, Graupman bored a hole in her third ventricle, increasing the flow of spinal fluid and allowing any excess fluid to drain—effectively avoiding hydrocephalus in the future.
Susan says Maia’s surgery day was a whirlwind, but she made time to warn Graupman, “If you hurt her, I'll kill you.” She still smiles when she recalls his response: “I'm okay with that, because I won't hurt her.” He didn’t. After a short recovery period, Maia was up and back at it, still going to therapy for her cerebral palsy and ACC, but as active as ever.
Setting Up Lifelong Care
Currently, Maia gets 24 botulinum toxin injections every four months for her cerebral palsy. She's completely sedated while the medicine is injected throughout her calves, hamstrings, and hip flexors. Susan says the injections relax Maia’s muscles, keeping her more comfortable and mobile, but they’re expensive.
Susan constantly thinks about how Maia’s care at Gillette would not be possible without Medical Assistance. “We’re not on welfare, we’re not supported by the state in that way;” Susan says, “but my son and I just can’t handle the weight, the cost, of chronic care.”
These injections keep Maia out of a wheelchair. They keep her walking. They keep her in school; allow her to keep up with her friends. They are stopping further damage to her bones. Susan keenly feels the turmoil in the health care industry and worries what it might mean for Maia. “Maia's pretty darn close to OK, and the medical expenses are still outrageous,” Susan says, “I can give her my love, but I can’t give her my medical insurance.”
And there’s a lot to love about Maia. She’s a life-of-the-party type of kid—happy, outgoing and social—she lights up the room with her absolute joy. “I know more neighbors than ever before in my life because of Maia,” Susan says, “Everyone is just drawn to her.”
Courage is a huge attribute of Maia’s. Only 11 years old, she’s already experienced stressful and scary events that most adults could never dream of, and she’s doing it with the enthusiasm of bubbling youth. She's determined to be an advocate for herself and recently participated in the March for Science with Susan to support the advances that have kept her walking and learning. Susan says, “I want her to be opinionated and strong-willed. She’ll need to be able to stand up for herself.”
Susan has already seen what Maia can do when she truly fights for it. A year-and-a-half ago, Maia started to hate her leg braces. She was worried about the opinions of her classmates; she couldn’t wear fun sandals; she looked dorky in a skirt. Susan and Maia argued and worried and clashed for weeks because Maia needed the braces, but wearing them was causing her stress.
Finally, during an appointment with Mark Gormley, MD, they brought the conflict to the table. He listened to both sides advised that she just wear them at night. Problem solved in an instant. “He's treating her cerebral palsy—that's his expertise. But he doesn't want her to be unhappy—that’s his humanity,” says Susan.
“I’d trade places with Maia if I could,” Susan says, “But I’m grateful that she’s at Gillette. We went there strictly for the medical expertise, but once we got started, we found people we could trust and who care about you and your kid.” Maia has undergone brain surgery, psychological testing, EEG testing, gait analysis, botulinum toxin injections and more at Gillette, but Maia has no fear about her appointments. She just wants to be able to be outside, ride horses, and keep traveling the country.
A few weeks ago, Maia was comfortably sprawled on the floor, exhausted after playing outside all day. A map was spread out before her and her finger hovered somewhere over the Rockies. As Maia heard her grandma’s footsteps on the carpet, she looked up from the map; shook her curls out of her face and smiled, “I found our next adventure.”