How a New York City Teen With a Rare Muscle Disease Helps Others ‘Find the Ability in Disability’

In many ways, Greta Baier, 14, is your typical New York City teenager. She loves the arts — she plays piano, sings, and has been dancing since she was 5 as part of three different dance companies. She’s also a straight-A student who loves technology and is considering a career as a computer scientist or engineer. Her social feeds document her life as she travels, poses in the latest fashions, and explores favorite hidden spots in the city.

But unlike most teens, Greta does this all while living with nemaline myopathy, a rare genetic disorder that impacts fewer than 5,000 people in the United States. The disease weakens the muscles throughout the body and can make it difficult to perform basic functions like walking, speaking or even breathing. In Greta’s case, she uses a wheelchair to get around and a ventilator to breathe, and as a toddler was diagnosed with a severe case of scoliosis.

Her disability has never stopped her from doing what she loves, and a few years ago she started a blog to help spread awareness about the disease and advocate for inclusivity for disabled people. “A lot of families with kids like me lose hope very quickly and are paralyzed with fear,” Greta says. “Sharing my experience with the world is so important to me.”

Greta is honest about the good times and the tough ones, and is quick to acknowledge that she makes it all work with the help of those around her, including her dogs, Maisie and service dog Midas; her moms, Lyn and Kate (their family motto is: “No matter how challenging things can be, we will make it work”); and her orthopedic surgeon, Dr. Michael G. Vitale, chief of pediatric spine surgery at Och Spine at NewYork-Presbyterian and NewYork-Presbyterian Morgan Stanley Children’s Hospital.

A Long-Term Plan to Treat Scoliosis

Many children with nemaline myopathy develop scoliosis because their back muscles aren’t strong enough to support their spine as they grow. “We knew very early on that scoliosis was going to be something that we were most likely going to have to deal with,” Lyn says.

From the age of 2, Greta started wearing a full-body brace to try to prevent further curvature of her spine, but it wasn’t enough to improve her quality of life as she got older. “Her back was curving over and one lung wasn’t functioning, and so she was sick a lot,” Kate adds. “Even a small common cold is a big deal for a kid who’s on a ventilator and can’t breathe very well.”

Lyn and Kate asked around for recommendations for a spine surgeon and several who had nemaline myopathy mentioned Dr. Vitale, who is also a professor of orthopedic surgery at the Columbia University Vagelos College of Physicians and Surgeons. They made an appointment at NewYork-Presbyterian Morgan Stanley Children’s Hospital and went for their first visit on Greta’s first day of kindergarten.

The Baiers expected a simple consultation, but after seeing the X-rays, Dr. Vitale quickly recommended a course of treatment to help correct Greta’s spinal curve, which was already at 70 degrees. “She had a series of surgeries that allowed us, over time, to maintain her spine growth,” Dr. Vitale says. “By straightening the spine and allowing growth, we allow these children to live a life that in previous years had been really difficult.”

Greta’s first surgery was in 2013 at age 5, when she had vertical expandable prosthetic titanium rib growing rods implanted in her back, a relatively new treatment at that time. These rods are curved rods that attach to the ribs and hips using hooks. They were lengthened every six months so that Greta’s spine would straighten as it grew and enable her lungs to develop properly.

When Greta was about 8 years old, Dr. Vitale transitioned her to an even newer treatment using magnetically controlled growing rods. It required a second major surgery to implant them, but unlike with traditional or vertical expandable rods, Greta would no longer have to go into surgery to lengthen them. Because the magnetic rods have a magnet in the center, they can be controlled with a remote device placed over the magnet. Every 3 months, her rods could be lengthened non-invasively within a few minutes.

Finally, in July 2020, Dr. Vitale performed a spinal fusion on Greta, in which permanent rods and bone grafts are used to help fuse the spine into proper position. It will likely be the last spine surgery she’ll need.

Through it all, Lyn recalls that Dr. Vitale always kept Greta the center of his attention. “He always talks to Greta. It’s always about how she’s doing, how she’s feeling,” she says.

“Greta is an amazing kid. This is a kid with a tough disease, it’s a disease that affects the body of children, not their minds,” Dr. Vitale says. “A really important part of what we do is to connect with that individual patient and make them feel special and cared for.”

Throughout the whole process, “Greta has had really natural growth in her own body and all of her organs were also able to develop appropriately,” Lyn says. “I’m able to sit comfortably in my chair and my posture is probably better than most people’s,” Greta adds.

An Advocate for Inclusivity

Since her surgery, Greta has started a new school, made a short film at film camp, recorded a podcast on inclusive dance, and even appeared on live TV with her dance troupe. But even when she felt her weakest right after her last surgery, Greta continued to blog about her experience from her hospital bed, with Lyn typing for her.

“When I first started writing my blog, that was really the start of my advocacy,” she says. “I’m in my first year of high school now, and the older I get, the more I notice the challenges I face every day — and the more I want to get involved in making a change.”

She hopes that sharing her perspectives on her blog and social channels will help change the way others think about people with disabilities. “People assume that I don’t live a good life and I want their pity, but in reality, I have had so many amazing opportunities and experiences,” she says. “With every surgery that I have had, with every ventilator and with every wheelchair, I have lived my life to the fullest.”