Baltimore — Kavita Krishnaswamy had labored through seven years of coursework in math and computer sciences to achieve a perfect 4.0 grade-point average. The University of Maryland Baltimore County graduate student had invented robotic devices that are discussed around the world. She had spent three years narrowing the focus of her doctoral dissertation.
But when the day arrived to defend her dissertation proposal before the panel of senior academics who would allow her to proceed, she never showed up.
She sent her robot.
Krishnaswamy lives with spinal muscular atrophy (SMA), a rare genetic disorder in which a breakdown of nerve cells in the brain and spinal cord prevents the brain from sending the messages that direct muscular movement. She defended her proposal the way she participates in every class and lecture — through the Beam, a rolling, two-way-telecasting robot that she operates from 16 miles away.
Paralyzed from the neck down but for a few muscles in her right hand, the 35-year-old Columbia, Md., woman needs round-the-clock care and rarely leaves her home. But she spends her days and nights designing devices that, like the robot she uses to visit UMBC and points beyond, help those living with severe disabilities to attain greater independence.
Already a recipient of Ford and National Science Foundation fellowships, she has earned additional funding for her research from two more awards: the Microsoft Fellowship and the Google Lime Scholarship.
Krishnaswamy designs robotic devices to allow severely disabled people to move their arms and legs simply by moving a computer trackball, speaking or changing their facial expressions. She is pursuing a doctorate in computer science.
"I'm always asking how technology can help a person who has a disability become more independent," she said.
Krishnaswamy, who is due to earn her doctorate next year, is working with one eye on the clock. Her illness is progressive.It could rob her of her remaining mobility — and her ability to breathe — with little warning.
Changing the world is a lot to ask of anyone, let alone a person who needs a machine to connect with it and has no idea whether her time on Earth is numbered in decades, years or weeks.
Those who know Krishnaswamy say that if anyone can invent a way, she can.
Krishnaswamy was born in the Indian state of Tamil Nadu, the daughter of Ramesh Krishnaswamy, an aerospace engineer, and his wife, Pushpa, who has a bachelor's in economics.
Like most parents of children with SMA, they were unaware that both carried the genetic mutation that — if passed on by two parents — can trigger the disease. The malady affects 1 in every 10,000 births.
In healthy individuals, a gene known as SMN1 produces the "survival-to-motor neuron," a protein that then generates the specialized nerve cells that control most muscles. People with SMA can't animate those muscles, leaving them to atrophy and eventually become paralyzed from disuse.
Sixty percent have the severest form of SMA, Type I, which appears during infancy, makes breathing difficult, and usually causes death by age 2. Another 20 percent have Type II, which materializes after a child learns to sit up and prevents further development.
Type II patients never crawl, walk or stand. All settle into a plateau of gradually decreasing strength.
All need extensive caregiving. A few survive into their 50s.
Thomas Crawford, a pediatric neurologist with Johns Hopkins Medicine who has treated Krishnaswamy since she was 12, says her condition is not unusual for a Type II adult.
"She is profoundly weak," he says. "She's not sitting. She manages [her] communication device with the barest little bit of power in her fingers. She has her eyes and her voice — those work. And she has her intelligence, which is substantial."
In some ways, Krishnaswamy's life has been a process of harnessing that intelligence and putting it to effective use.
Growing up, she was always a star in math, even as she dealt with skeletal pain and spinal fusion surgeries. She could operate a wheelchair during her high school years but had no idea whether she would have the strength or the opportunity to attend college.
In 1998, as a member of the math, engineering and science achievements club at Wilde Lake High School in Columbia, she became the first student in school history to take part in the statewide robotics competition sponsored by the Institute of Electrical and Electronics Engineers.
Unable to construct a device herself, she designed one digitally. Her younger brothers built it to her specs.
The competition was a race. Her device — a robot encased in a penguin costume — won third place, and a light went on in her mind.
"At the time, I didn't know much about it — there was no Internet or Google — but I was thinking, maybe there's something I can really do with this," she recalled. "Maybe I could do something more helpful to others. Maybe I could help to design the kind of technologies that could help people like me."
Assistive robots have existed for years, says Tim Oates, Krishnaswamy's doctoral adviser.
But disability comes in an infinite range of severity, and most devices require at least moderate strength to operate.
Krishnaswamy found her passion, Oates said, in thinking about ways "to create a low-fidelity interface, such as a mouse, to control a robot with high degrees of freedom.
"What if you can only use a finger to control a mouse, or if you have tremors, or if the signal you're generating is noisy? How do you smooth that all out?"
Krishnaswamy has spent her 10 years in graduate school addressing such questions. She has drawn on her skills in artificial intelligence, software design and other forms of technological communication to design simulated versions of more accessible devices.
She has invented 10 so far.
Several focus on ways of lifting or moving the body or limbs, a necessary element of health maintenance — and one for which people with severe disabilities typically depend on caregivers.
Many such people use specialized air mattresses to soften the pressure that can lead to bedsores, but current models require a caregiver to pump them up.
She devised and tested a simulated mattress whose nine chambers she can inflate or deflate by trackball or voice command.
UMBC engineering students have built a miniature version to her specs, and Krishnaswamy and Oates say the team will have a full-size version up and running within six months.
For her doctoral project, Krishnaswamy is working with Maya Cakmak, a computer science professor at the University of Washington who specializes in human-robotic interaction.
They are developing low-fidelity interfaces that control the PR2, a two-armed, multifunctional robot designed by Suitable Technologies, the Seattle firm that invented and markets the Beam. The PR2 can help people with disabilities reposition their arms or legs, feed themselves and brush their teeth.
Their goal is to help those with little or diminishing strength to control the PR2 using only a mouse or voice command.
No one knows how long an SMA patient will live — its progression is gradual yet steady throughout the course of a person's life — but Krishnaswamy's case is so advanced that any further muscle loss could jeopardize the minimal mobility she has and, ultimately, her ability to breathe.
SMA patients and their families received good news in December when the FDA approved the first therapy for the disease, a drug developed by Biogen, known as Spinraza.
Approved for all types and stages of SMA, the drug offers no cure, but years of clinical trials show it can slow the progression of the disease and help sufferers meet motor milestones including head control, crawling and standing.
But it costs $125,000 per injection for five injections in the first year alone. Mandates for coverage within the insurance, state government and health-care bureaucracies are just coming into focus.
Johns Hopkins, a pioneer in the emerging field, is one of the handful of hospitals in the region to offer the treatment. But because its earliest clinical trials focused on the use of the drug for children, the facility has yet to secure full approval to offer it to patients of all ages.
Crawford says he expects that approval soon.
That could prove a lifeline for Krishnaswamy, who is too weak to travel to the Hospital of the University of Pennsylvania in Philadelphia, which offers the treatment.
Krishnaswamy confesses to moments of stress and anxiety, but she says knowing her purpose keeps her looking forward to a long and productive career in robotics research, either in a university setting or in private industry.
"I think we are all born with a mission to complete in life," she says. "If we find that, we can pursue it and have passion in life pursuing it. I believe God has given me this mission to bring this accessibility of robotics.
"Where there's a will, there's a way."
— Baltimore Sun