Illuminating Unseen Dimensions
In Pursuit of Life
Maria Llave’s parents left their home to seek treatment for her. They found her future.
Maria Llave, 18, zips into the living room in her power wheelchair with a relaxed and confident expression. Dark, shiny hair frames her glasses as she glances toward the window, eager for her friends to arrive. The doorbell rings and four of her best high school buddies stroll into the room, exchanging cheek-kisses with Maria and her mom, Milly. The house quickly erupts into loud chatter, gossip, and giggles. Who got into drama club this year? Who is dating whom? Her friends recline on the sofas around Maria comfortably as if it’s their second home. There is a knock on the door.
“Ms. Shane!” Maria calls out, “Come in!”
Ms. Shane has been Maria’s school aide since preschool, and Maria considers her a second mom. The atmosphere is festive as Milly passes out turkey sandwiches, which the teens devour in seconds.
Maria was born in Peru. When she was about 3 months old, her parents noticed she was not rolling over like she should. Over time, she did not meet other physical developmental milestones, such as pulling herself up in her crib and crawling. Concerned, her parents pressed the issue with her pediatrician, who sent her to a neurologist who eventually diagnosed her with spinal muscular atrophy (SMA) type 2, a genetic neuromuscular disorder that causes progressive degeneration of nerve cells and, thus, muscles.
Her parents were shocked at the diagnosis and dismayed when they were told Peru did not have adequate medical treatments for Maria. The only options for treatment were in Argentina and the United States. Without hesitation, they did what they needed to do. Milly and Felipe left an entire life behind — they quit their successful careers in business, sold their house, and said tearful goodbyes to their extended family. They boarded a plane to New York with a fussy toddler, a few pieces of luggage, and hope that they would gain access to the medical treatments that were needed to keep Maria alive and well.
A new country, and a road to confidence
Life in the United States was a huge adjustment. Where in Peru Milly and Felipe had held high-level business positions, in the United States they lived for years on minimum wage, working at McDonald’s. They had no immediate family to help them care for Maria, who was just 15 months old when they moved.
“Moving was a sacrifice that I wanted to make because I wanted her to have the best of everything,” Felipe says. “I wanted her to grow up as healthy as possible, to do what she could on her own. My dream was for her to be independent one day.”
The move, and all of the hard work that came with it, paid off. Maria received top medical care at Columbia University Irving Medical Center, where her diagnosis was confirmed. She began physical and occupational therapy, obtained access to various trial medications, and received care from doctors at the top of their field. Her parents watched with pride as their toddler learned to harness her motor skills. At 5 years old, she got her first power wheelchair.
“She was so excited, she was squealing and zooming around,” Milly says.
Maria’s elementary school years were an exciting time of growth and change.
“When I was little, I don’t even remember being aware of my illness,” Maria says. She happily played with other kids who didn’t take much notice of her wheelchair. She thrived academically, learning to read and do math. Her school aide, Ms. Shane, recalls with fondness how adorable Maria’s personality was — vivacious and curious and persistent.
“She never let anything get in her way,” she says.
Maria says she began to struggle in middle school.
“All of the sudden I was self-conscious and aware of what I couldn’t do that others could,” she says. “Like, sports were really big. I wanted to play them and I just couldn’t. Also, I didn’t know who my friends were. People who had been my friends in elementary school ... we just weren’t talking anymore.”
For one week each summer, Maria could free herself of the social challenges of middle school by attending MDA Summer Camp, which she had attended since the age of 6.
“At camp, we [campers] basically can be normal for a whole week,” she says. MDA Summer Camp allows kids of varying levels of ability to play baseball or do laser tag in accessible ways. “I have made lifelong friends at camp,” Maria says. “It’s a place where I completely belong.” Instead of social isolation, camp gave Maria a community unlike any other — a place where she was not the “other” but the norm.
Maria’s Summer Camp experiences helped her develop a confidence she carried to high school. She auditioned for musicals, landing parts in three, in which she sang and performed dances. She was accepted into the selective drama club, a place where she found good friends and gained theater skills. She now performs regularly with the high school concert choir and the women’s ensemble.
Maria attributes much of her courage to try new things in high school to her experiences at MDA Summer Camp, which taught her that her physical limitations didn’t define her capabilities.
Independence on the horizon
In Maria’s senior year of high school, which she just completed, Ms. Shane helped to get school supplies out of Maria’s backpack, serve her food from the cafeteria, and, if Maria was tired, take notes for her in class. Maria’s course load included AP psychology, honors English, honors calculus, and French 4. Ms. Shane acknowledges that Maria had far surpassed her own ability to keep up with the coursework.
Now, Maria is readying to go to college. Ms. Shane shakes her head in disbelief. “I don’t know what I’ll do.”
Maria, however, is ready for the change. She was accepted to Hofstra University, which was her top choice because of its strong academics and accessible campus.
“In college, I’ll have to hire and manage my own aides, which I’m nervous about,” Maria says. Even so, Maria is itching to get out of the house and live on her own. Friends from Summer Camp who are already in college regularly offer her advice and support, boosting her confidence about tackling the challenges of college. She plans to study philosophy and then go to law school to become a criminal lawyer.
“I want to be an attorney, and then a prosecutor, then maybe a district attorney,” she says. “I like setting goals for myself.”
Maria says that, in a lot of ways, she’s had to grow up faster than her peers. She attributes part of that to living with a disability, part to having undergone seven surgeries for various issues related to spine growth, and part to having to help her parents navigate a new country, often serving as a translator to help them get by.
Maria’s friends chime in, teasing. “Yeah she’s way more mature than us.”
Today, Maria and her friends have plans to go to the mall for boba tea.
“What’s boba tea?” asks Ms. Shane, and the teenagers burst into exasperated laughter.
“Ms. Shane! How can you not know boba tea? Haven’t you ever been to the mall?”
Maria and Ms. Shane make eye contact and Maria shakes her head with her lips pursed. “Sometimes I have to teach her everything,” Maria says. She glances at her watch and announces that it’s time to go. “Unfortunately my parents still have to drive me everywhere,” Maria says rolling her eyes. “That’s one thing I wish I could change.”
The mall is bustling with shoppers, and the teens take selfies with Ms. Shane as she tries her first boba tea, giving it mixed reviews. By any measure, the afternoon appears to be a typical teen outing at the mall, but the sacrifices and tenacity that have brought Maria to this point are nothing short of extraordinary.
Maria maneuvers her wheelchair toward a shop window full of glittering dresses.
“Let’s go,” she says. There’s a collective “yes!” and a quick goodbye to Ms. Shane, who watches as Maria, an independent young woman ready to take on the world, confidently disappears into the crowd with her friends.
