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Bent, Not Broken

The New York Times—April 30, 2010

THE young teacher knows every bump and pothole along the 10-minute ride to school. The entrance to the Bruckner Expressway is the worst. “Watch this one coming up,” she calls out to the Access-a-Ride driver.

Dayniah Manderson, 30, an immigrant from Jamaica, cannot walk or bathe herself. Since she needs help going to the bathroom, she skips breakfast and does not drink anything during the school day.

When Ms. Manderson’s $35,000 motorized wheelchair rolls over aging blacktop and concrete, she feels every bump and crack in her bones; each sidewalk seam and tree root jolts a nerve. From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit — a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world.

As a 2-year-old in Montego Bay, Jamaica, Dayniah clung to her mother, Millie Williams, when she was encouraged to walk. Doctors at a clinic in Kingston gave her a diagnosis of muscular dystrophy. Ms. Williams said one told her to “prepare a coffin.”
Specialists said Dayniah had spinal muscular atrophy Type II, a degenerative neural disease that occurs in 1 in every 6,000 children. It is caused by a genetic defect. Motor control diminishes, muscles weaken and, eventually, movement ceases. The prognosis for Type II varies widely. But when Dayniah was doing research for a school paper on the disease, her heart sank: The encyclopedia said those who had it rarely lived beyond 30.

Most spines look like 6 o’clock — straight up and down; by the time she was 14, hers had folded to 5:40, a 111-degree angle. She could not hold herself upright in her chair. The more bent she became, the harder it was to breathe, as her ribs pressed down on her lungs.
Ms. Manderson had grown accustomed to people’s saying she could not do what she wanted, and had learned to ignore the not-so-subtle admonitions that perhaps her ambitions were too big, given her disability. At a job fair, a principal warned her that the students might “throw her down the stairs.” But another offered her a job.

Being a teacher, of course, did not stop the disease’s progress. Breathing became something she had to work to do rather than an involuntary act. “I was waking up with pain, going to sleep with pain,” Ms. Manderson recalled. “I’d cry every other day in the shower.”
She knew time was running out, and was horrified at the thought of what would happen to Akasha. Dr. Shapiro said she thought she was a year away from having her spine collapse and began searching for surgeons. “No one would take her,” Dr. Shapiro said. “It’s very common because most people think, ‘Why bother? She’s going to die soon anyway.’ ”

Then, while watching the Discovery Channel, Dr. Shapiro learned about Dr. Oheneba Boachie-Adjei, an orthopedic surgeon who specialized in correcting severe spinal deformities. She called him and described her friend’s condition. He agreed to take the case.

Dr. Boachie-Adjei, 59, has a deep voice that brims with a comforting confidence. Born in Ghana and educated at Columbia University, he practices at the Hospital for Special Surgery on the Upper East Side. Most years, he returns to West Africa and performs at least a dozen spinal surgeries at no charge.

By 2007, he had done the four-hour operation that Ms. Manderson needed 35 times before, but, he said, “it is always risky.” The spine is exposed and untwisted. Steel bars are affixed to the vertebrae and anchored to the pelvis.

Ms. Manderson weighed the risks and the benefits: With the pressure relieved from her lungs and internal organs, she could expect to live an additional 10 to 20 years.

When Ms. Manderson awoke from the anesthesia on Feb. 6, 2008, she immediately knew something was different. “For the first time in my life,” she said, “I could take a deep, full breath.”

Read the full story at nytimes.com.


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