Annie Altizer is trying to remember what it was like to run. She is 18 now, and it has been five years since she was able to streak down a soccer field, something she started doing when she was 4 years old. In fact, the night before she woke up unable to use her legs, she played in a game.
The match was uneventful. So when she’s asked about it today—whether there was a last-second goal or a shootout or any daring defensive maneuvers—she can’t say much. But then she thinks back to aiming her head down and seeing her outstretched shadow gliding a few feet ahead of her as she sprinted, her ponytail whipping back and forth.
“That’s what I remember best,” she says.
That night, after the game, Annie’s muscles cramped, and she had trouble walking around her two-story home. She lost her balance a few times and tripped over her legs, which didn’t seem to be processing the orders her brain was sending them. In the morning, she awoke with her lower extremities feeling as though they were on fire. “A horrible pain,” she says, her voice quaking. She tried to stand up and crumpled to the ground. Then numbness set in, blotting out the feeling in her toes, her calves, her thighs.
“I picked her up off the ground and was trying to make her stand and bear weight,” says her father, Jeff Altizer. “I didn’t tell her I was going to do that. I just kind of lifted her up and then I let her go. She didn’t stand up.”
The rest of her life began in a hospital room packed with balloons at Children’s Medical Center at Legacy. After a flurry of baffled doctors, in walked a towering man wearing blue jeans and a pair of cowboy boots. Dr. Benjamin Greenberg had only been in Texas a few months. Children’s had plucked him from Johns Hopkins University School of Medicine in Baltimore to start the second transverse myelitis center in the United States. As he eased into a rocking chair, he stared into Annie’s eyes and delivered the diagnosis to his 13-year-old patient.
Transverse myelitis is a rare inflammatory disease that attacks the spinal cord, damaging the connection between the brain and the nerves that control muscles. It strikes seemingly at random; researchers have not established a solid genetic or environmental link.
“Some people gain all their function back, but some don’t gain any function back,” Annie remembers being told. “I know that if you work really hard at PT, then you’ll definitely make some gains.”
There are about 1,400 new diagnoses each year, according to the Transverse Myelitis Association. Many of the specialists who treated Annie had no knowledge of the disease before Greenberg approached them.
“We focus on the underlying processes that cause the disease and identify the experts who don’t realize that they have a major contribution to make to these patients and bring them into the fray,” Greenberg says.
That’s how Dr. Jonathan Cheng found himself rewiring Annie’s nervous system 10 months after her diagnosis. A nerve that controlled her ankle was injured. She was taking steps by then, but she couldn’t move her ankle vertically. She tripped over her toes. Cheng made a 6-inch incision on the side of Annie’s leg, just below the knee, and restored the nerve supply to the paralyzed muscles that lift her foot. Now Annie doesn’t drag her toes on the ground. She can jog about 20 feet. She drives. A senior at McKinney Boyd High School, she plans to apply to the University of Texas later this year.
“Most patients who get this disease and are not in Dallas get told by doctors over and over again that whatever recovery you get at six months to a year, maybe two, is all the recovery you’re going to get,” Greenberg says. “That is one of the worst lies in all of medicine.”
In July, Annie’s big toe tingled. It was the first time she had felt it in five years, just another stride closer to seeing her shadow ahead of her in the field again.