A Catonsville girl's life-changing illness puts a family on an uncharted path to recovery

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Tracy Horch knew for sure that her daughter Keely's brain was intact on March 14, two weeks after the active 12-year-old suffered a stroke that left her paralyzed from the neck down.

March 14 was Pi Day, and math is Keely's favorite subject. She could always recite the first 35 digits of the mathematical formula. But after a rare, sudden illness, Keely wasn't able to speak.

When her mother asked her if she could try, Keely started blinking, fluttering her blue eyes each time she needed to signal a number. She got all the way to the 35th digit — eight. Tracy knew that Keely had retained her memory.

In late February, Keely woke up with a pounding headache, dizziness and nausea and was found to have a pneumococcal disease, a bacterial blood infection that led to severe swelling in her brain and spinal cord damage.

Within hours, the middle school student who loved running, hiking, baking and soccer had become a quadriplegic.

There is no clear or definitive explanation for how Keely was infected, said Dr. Michelle Melicosta, her attending physician at Kennedy Krieger Institute, a rehabilitation center that works with pediatric patients who have spinal cord injuries.

While the initial infection is not uncommon, Keely's severe sickness and paralysis is, Melicosta added. In the United States, there were an estimated 3,700 deaths in 2013 from pneumococcal meningitis and blood poisoning.

"It's one of those once-in-a-career diagnoses where it's just not what you expect to have happened in an otherwise healthy child," she said.

For the Horch family, doctors visits have been riddled with confusion at the lack of a clear diagnosis. Tracy thinks it was bacterial meningitis, which Melicosta says is possible but was never confirmed.

"It's hard, because we just have no idea what it was," Tracy said.

Since that day in February, the Horch family has seen an outpouring of support from Catonsville, with families, friends and strangers packing them meals, helping them move or holding fundraisers for Keely, a student at Arbutus Middle School.

Keely was discharged July 25 from Kennedy Krieger in Baltimore, where she spent about four months doing six to seven hours of physical and occupational therapy every weekday, and half days Saturday.

Her mother, 56, an adviser at the Community College of Baltimore County in Catonsville, didn't leave her side and slept a few feet away from her bed on a pull-out couch every night. Her father spent the days working as an engineer at Northrop Grumman, spending time at home with Keely's teenage brothers, Liam and Henry, and visiting Keely as often as he could.

There's no clear prognosis, so doctors remain unsure of whether Keely will regain use of her arms, legs and neck. The paralysis happened after Keely suffered a stroke the day she was diagnosed.

But Keely is determined.

"She wants to change the world," her mother said. "Sometimes on her high days she's like, 'I'm going to be the first quadriplegic president of the United States.' And then she says, 'No, I'm not. I'm going to be a paraplegic, because I'm going to get my arms and my neck back."

"I'm gonna kick this thing"

At 5:30 a.m. on Feb. 26, when Tracy was getting ready to go on her morning run, Keely told her that she had the worst headache of her life. Within an hour, she was throwing up. Tracy thought it must be a migraine, the flu or dehydration, so she scheduled a doctor's appointment for 9 a.m. the next day.

In the examining room, as soon as Keely said she was unable to put her chin to her chest due to neck pain, the doctor suspected it could be bacterial meningitis and called an ambulance that took Keely straight to St. Agnes Hospital in Baltimore, where she received fluids through an IV, Tracy recalled, and doctors conducted a CT scan. They still weren't sure what the problem was.

By 11:30 a.m., Keely had suffered a stroke — a disruption of blood flow to the brain — and was paralyzed from the neck down.

"I got their immunizations, I thought we were safe," Tracy said. "We do hiking in the woods, we go to the Adirondacks. If there were bugs or anything out there, I just didn't think a lot of it — you know, it wouldn't happen to us … I didn't know she could stroke, I didn't know this could happen so fast."

Keely was moved to Charlotte R. Bloomberg Children's Care Center at Johns Hopkins Hospital in Baltimore, where she underwent four hours of surgery in the pediatric intensive care unit. Hopkins doctors familiar with Keely's case did not respond to requests for comment in time for publication to outline the details of the surgery.

Keely spent the next month feeling "like she was in a fog," and communicating using a board and letters, her mother said. She moved to Kennedy Krieger in March, where she underwent physical therapy, occupational therapy and respiratory care. She required a mechanical ventilator to breathe. She was fed through a tube placed into her stomach.

At Kennedy Krieger, doctors work to help patients regain as much function as possible, Melicosta said. For Keely, that started with speech.

Hanging on the blue walls in her room at Kennedy Krieger were dozens of photos showing her playing soccer and with her family at Christmas, her favorite time of the year. Keely said the photos made her feel more comfortable. By the door, there was a brown paper bag with writing on it: "I want people to tell me before they do anything."

It was important to Keely that doctors not treat her like she wasn't able to understand them because she couldn't talk back, Tracy said, so she had that sign made. After regularly working with a speech therapist, she could talk again in April.

Keely would spend up to seven hours a day working with physical and occupational therapists on exercises, such as holding her neck with some support up to strengthen it, or going for miles on a bike that electronically stimulated her legs to encourage movement. She joked that she had worked on every machine in the gym.

Keely eventually learned to control her power wheelchair with her chin — using an adjustable joystick — and she was referred to a hospital in Ohio in June where she got a diaphragm pacer that allowed her to disconnect from the ventilator to breathe for brief periods.

Meanwhile, her mood fluctuated.

"She would have a day where she was like, 'I'm gonna kick this thing, no worries,' but the next week it was terrible," Tracy said.

She misses playing soccer and running, and sometimes "gets really sad about what she used to do," her mother said. Keely loves baking, and used to spend hours in the kitchen watching videos to perfect her cupcake decorations. But she's embracing more and more what she can do now, her mother said. Her mood brightened significantly in the weeks before her return home.

Keely would have "dance days" on Fridays at Kennedy Krieger, when she would pick a song — something upbeat and festive, like the "Cha Cha Slide" or the "Cotton Eyed Joe" — and 20 to 30 hospital staff members would show up in her room and dance.

The Catonsville Cobras, the soccer team she played on, put her on the roster again. Her mom is already thinking ahead to when Keely will join her in races in a wheelchair.

"Miracles have happened," Tracy said. "And I'm not closing any doors."

Flickers of movement

While the family's insurance — Blue Cross Blue Shield — covered most of the hospital stays and are covering her power wheelchair, some of the post-discharge equipment Keely needs, such as a shower chair, could cost hundreds of dollars, according to the family.

Insurance doesn't cover diapers or gloves either, Tracy said. Making a van handicap-accessible or purchasing the bicycle Keely exercised on at Kennedy Krieger can cost tens of thousands of dollars.

"All of those things, it's surmountable," Tracy said.

Tracy credits Catonsville, where she has lived for 20 years, for providing the family with "phenomenal" support: They helped the Horch's move from their Victorian house in Paradise; there wasn't enough time to renovate, and the Horch's knew a family with an accessible home on the market. Catonsville residents have also held fundraisers to help cover Keely's medical costs.

Kilometers for Keely, a 5k run in June that will become an annual event in Catonsville, raised more than $10,000 for the family's medical expenses, according to Mary Phillips, a Catonsville resident who helped organize the event. Keely's father, David Horch, 55, is the president of community biking advocacy group Rails to Trails. The group dedicated their July 4th ride from Catonsville to Fort McHenry to Keely, and raised more than $1,000.

Rails to Trails Vice President Sheldon Smith said he's never seen residents go above and beyond this much before.

"But see, that's Catonsville," Smith said. "The community has really come together."

Tracy thought Kilometers for Keely would be a good opportunity to visit her friends and the rest of the community. But the outpouring of support caused her to spend the whole fundraiser crying.

"People ask me, 'What did you have to do?' I did nothing," Tracy said. "I do nothing. I do nothing except stay with my daughter and try to be a constant for her. She's probably sick of me … but she knows that I'm gonna be there. That's what the community has allowed me to do."

And on the morning Keely was discharged from Kennedy Krieger, friends, family and community members gathered outside her new house with signs welcoming her home.

Now that Keely is home, Tracy said it feels like the family is "on their toes" 24-hours-a-day, seven days a week. There's a nurse at the house for daily eight-hour shifts to help the family monitor her.

Keely plans to return to Arbutus Middle School in September, where she'll be in seventh grade. She'll be splitting time between half days of class and outpatient therapy at Kennedy Krieger three times a week, where she will also periodically see a psychologist to "make sure she's doing OK," Melicosta said.

It's hard to predict a potential recovery timeline, Melicosta said, but during Keely's stay at Kennedy Krieger she regained some sensation on the upper right quadrant of her body, which indicates some recovery is occurring.

"It's good that we're seeing little flickers of movement," Melicosta said. "I would never say I can predict for sure what degree of recovery she's going to get, but I also wouldn't limit it."

Tracy said she's not sure what the family will do next, but envisions starting a foundation for Keely that would help others, perhaps in health-care education.

Keely, however, has plans to go to the beach, visit her family on Long Island and eventually return to the Adirondacks.

"But that's further out there," Keely said.

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