Take a bow: Mother, violinist daughter share a genetic disorder and a dream

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CHICAGO — Rebecca Binkley was still setting up the video camera in the aisle of the seventh floor theater at Roosevelt University when Krissy Cooper took the stage holding her violin.

Finally, the mother and daughter were in the moment they had strived toward for decades, through hundreds of hospital visits and heartbreaking pep talks as each took turns insisting that they not let their shared genetic disorder win.

Many times in the last 20 years, the moment had seemed unattainable: as mother endured debilitating migraine headaches, which left her lying on the bathroom floor in pain; as daughter wailed on the curb on the way to violin lessons because her joints throbbed too much to walk. So often, Binkley postponed her own urge to cry to encourage her frail daughter who complained throughout grade school: "I'm so broken. I don't think I could ever be fixed," Binkley recalled.

But the two persevered, through symptoms of a rare connective-tissue disorder called Ehlers-Danlos syndrome and the financial challenges of helping Cooper to cultivate unmistakable talent. At times, that meant Binkley had to forgo the electric bill to pay for a new violin case or tuition at an elite music camp.

"She was doing everything. She was my mom and dad," said Cooper, whose father had distanced himself shortly after her birth.

On a recent weekend, as the theater filled with applause, the mother and daughter ended one journey and set forth on the next.

On that Sunday, Cooper, 25, removed her supportive neck brace, then walked to the center of Ganz Memorial Hall stage at Roosevelt, where she performed Bach, Beethoven and Prokofiev in a senior recital, the last requirement for her bachelor's degree in violin performance. After her formal graduation, she will pursue her dream of someday playing in a professional orchestra.

"I believe all children will kind of tell you what they like to do, and as a parent it's your job to listen," Binkley said. "I've wanted just what every mom is supposed to want, for her to be fulfilled and have a purpose."

Binkley's devotion to her daughter began the moment she was born, three and a half months prematurely, not quite 2 pounds and plagued with health complications.

Doctors at the neonatal intensive care unit at Prentiss Hospital in Chicago warned Binkley that her daughter would likely struggle with eye, lung and other potential problems, some of which could take years to surface, Binkley recalled.

She heeded the doctor's warnings but chose to be grateful. Whereas others saw a tiny, frail baby hooked up to heart monitors and breathing equipment, Binkley saw a fighter too stubborn to do anything but live.

And the new mother, determined to bring her struggling daughter peace, turned to music.

She used a portable cassette player to pipe music into her baby's isolette. For months in the hospital, she soothed the baby she could not yet hold with Mozart, Vivaldi and a variety of recordings she thought were calming.

"I thought, 'She's got to have something beautiful instead of just pain,'" Binkley said.

Cooper responded by thriving and growing, her mother said, despite still facing complications from being born underdeveloped.

Doctors allowed Binkley to take her baby home to her condo in Chicago's Wrigleyville neighborhood when she neared a 4-pound benchmark.

Cooper made it clear, even as a toddler, that she enjoyed music. At Christmastime, Binkley remembers her daughter practically jumping out of her lap to hear a children's orchestra performing carols. At home, the young girl pretended a paper towel roll was a violin, Binkley recalled.

Binkley enrolled her 4-year-old daughter in the Suzuki program at DePaul University School of Music, where instructors quickly recognized her potential and offered the single mother financial assistance to help pay for lessons. By the time Cooper was in seventh grade she played for Chicago Youth Concert Orchestra, and by high school, she was admitted to the Chicago Youth Symphony Orchestra.

All the while, the mother and daughter routinely returned to the hospital for physical therapy. In addition to the health issues connected to her prematurity, Cooper experienced painful, unprompted dislocations — of the knee, the shoulder and other joints — that led to even more doctors appointments.

In 2006, Cooper's pediatric rheumatologist at Children's Hospital, Marisa Klein-Gitelman, offered a new diagnosis: Ehlers-Danlos syndrome, a genetic disorder in which a person's connective tissues do not work properly. There are more than 10 categories of the illness, with symptoms that range from extremely stretchy skin that scars easily to problems with blood vessels that risk bursting, said Klein-Gitelman, who now heads the division of Pediatric Rheumatology at Lurie Children's Hospital.

Cooper's case was characterized by extreme hypermobility of her joints, which allowed her body to move past the expected range of motion, Klein-Gitelman said.

About 1 to 2 percent of the population worldwide have Cooper's type of the disorder, but it often goes undiagnosed because it is still not well-recognized, according to Brad Tinkle, director of clinical genetics at Advocate Healthcare who has published several books on the disorder.

Further medical tests revealed that Cooper shared Ehlers-Danlos with her mother, who had not yet known she had the disease. Fifty percent of mothers who have the illness pass the condition on to their children, and girls tend to feel more extreme symptoms than boys, Tinkle said.

At last, Binkley had an explanation for the debilitating headaches she'd suffered her entire life.

"You just got the sense that once we made this diagnosis, that it was this big 'Aha moment,' and they were very enthusiastic about getting things better," Klein-Gitelman said.

To cope, mother and daughter researched the disorder and scheduled rigorous therapy appointments to help Cooper — whose symptoms presented themselves much earlier and more severely than her mother's.

Cooper missed many days of school due to the condition, which in turn made her feel shy and disconnected from her high school classmates, she said.

The mother and daughter admit their relationship was not always perfect. During Cooper's adolescence, the pair bickered under the stress of the illness and about more routine topics — violin practice, sleeping in late, not picking up dishes.

Still, family and friends admired the way they supported each other through ups and downs.

"You don't often see mothers and daughters that are so close," said Hannah Cooney, 23, Cooper's best friend for almost two decades. "Every family has fights, but they made it through because they had to."

And while Cooper recuperated in casts from severe dislocations, the violin became an escape from the health struggles she had endured since infancy.

"Sometimes, it's kind of like an out-of-body experience," said Cooper of playing the instrument. "I get relieved and happy."

She took a year off after graduating from Lincoln Park High School then decided it was time to pursue her dream of becoming a professional musician. She prepared vigorously to audition for The Music Conservatory at The Chicago College of Performance Arts at Roosevelt University.

The small conservatory is made up of about 300 students. Each year, about 100 students graduate prepared for professional careers in music, said Mariama Torruella, assistant to the director at the conservatory.

Cooper was accepted without revealing her medical condition. But a few months into classes — which, during freshman year, run from 8 a.m to 8 p.m. before breaking for homework and practice — her health worsened. She began suffering seizures and excruciating headaches, university officials confirmed.

Just as she had her entire life, Binkley worked to keep her daughter calm.

"I said, 'Honey, your situation is different. It's not a race. You do what you can do,'" Binkley said.

When the mother and daughter finally told Roosevelt administrators about her medical issues, the college pledged to help her to the finish line. They made small but meaningful accommodations, such as allowing her to miss some classes, or to sit down instead of stand during performances. Her father, with whom she had reconnected, helped pay for her tuition.

Members of Chicago's professional music community also pitched in. Rachel Barton Pine, an international violinist who made headlines in Chicago in 1995 when a Metra train door closed on her instrument's case and dragged her, leaving her with severe injuries, lent Cooper a violin, bow and bought her a lightweight case through her charitable foundation.

Cooper accepted the gestures and flourished, practicing through headaches, performing in casts and holding the violin under her chin, even when her neck ached so much she thought she would faint, she said.

"I can't describe to you what kind of obstacles she's overcome to get this degree," Torruella said. "Krissy's example shows it doesn't' matter how you're suffering. The mind is so much stronger than the body. Your optimism and perseverance can overcome anything."

For her final recital, Cooper chose sonatas that would show the range of her abilities. The final piece, by Russian composer Sergei Prokofiev, was her favorite because of its complexity — which she finds fun, she said.

After the grueling finale, Cooper smiled and offered a gracious bow to the audience of friends and family.

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