UVic student fascinated by mysteries of universe

by Darren Stewart, Times Colonist

Claire Minkley took part in an innovative research project aimed at boosting the ability of disabled people to communicate. She has died at age 19.

It's difficult for John Minkley to capture the dreams of his remarkable daughter in his own words so he rummages through the house to find something to let her summarize them herself.

"I am interested in learning the mysteries of the universe and opening the mind of God," Claire Minkley said in one of many cherished essays, poems and prayers she wrote that her family keeps to remember her by.

Claire Minkley, a 19-year-old Victoria woman with a rare genetic disorder that made her unable to speak or effectively control her muscles, died suddenly, late Monday night. The cause of her death wasn't immediately known.

She leaves parents John and Melinda, and a 10-year-old sister, Lucy.

Claire Minkley was the inspiration behind "Project Claire," a UVic-based group of scientists developing breakthrough methods to allow severely disabled people to communicate.

The scientists hope to find a way to measure and read brain waves so people like Claire simply have to learn to control and vary the strength of their thoughts to communicate.

Claire started with the program while she was in high school but its success became more vital to her this year when she started university.

At the time of her death Claire was taking first year calculus at UVic and struggling to keep up in her physics class. Calculus didn't pose a problem.

She couldn't work the complex problems out on paper so she solved them in her head and managed to score a near-perfect mark on the placement test. But she was forced to merely audit the physics class because of her communication limitations.

UVic biologist, Nigel Livingston, head of the Claire Project and father of a disabled daughter, said Claire's death put him in a state of shock.

"This is devastating, I am shaken to my core," he said. "If anything, we are more determined now after losing Claire."

Claire was in the project's laboratory Monday, just hours before her death and Livingston said he's particularly saddened because of recent progress Claire was making with the technology. He said the projects going on at UVic will be a legacy for Claire.

"It's fair to say that we wouldn't be where we are today without her," he said.

Claire and her work with UVic researchers was profiled in Maclean's magazine in July. The profile inspired Burlington businessman Doug George to donate $20,000 worth of electronics equipment and invaluable technical support to the project last month.

The project has been expanded to work with people who have suffered strokes or have amyotrophic lateral sclerosis (ALS).

Claire's biggest challenge was getting things down in her own words, but it was one she overcame. She communicated through slow dictation with a special letter board. Using all her concentration she would point to a group of letters, then to an individual letter, forming 15 to 20 words an hour.

While Claire's body would not cooperate, her complex and sound mind flourished. She read textbooks on cosmology and religious studies, and quietly pondered the mysteries of science, but was unable to carry out the simple acts of life, such as scratching her back, brushing her teeth or even blinking her eyes.

Claire described her situation in her own words in another message:

"Pretend that you are playing the piano and you can't make any sound. That is how I feel."

She was an avid poet, a voracious reader and enjoyed fine dining and classical music. Despite the physical constraints and the limitations Claire faced in acting on her insatiable curiosity, John Minkley said his daughter never complained about being trapped in her body.

"That's not Claire," he said. "She carries everyone in her wake."

"She had that rare quality where she was able to reach out and touch people, particularly because of her straightforward determination."

Claire's prayers were often read by her father during the service at St. John the Divine Anglican Church.

She also formed a correspondence with one of the world's leading theoretical physicists.When Claire read A Brief History of Time she wrote the renowned author and scientist, Dr. Stephen Hawking, to take some of his black hole theories to task. Hawking, who suffers from ALS, responded to Claire, thanking her for the feedback.

Claire Minkley graduated a straight "A" student from Oak Bay high school last spring and like any fun-loving teenager, she had a busy social life, she cut classes to hang out with her friends, went to the pub on her 19th birthday and dreamed of completing a university degree.

"She was just a normal kid at school," said Jessy Reynolds, one of Claire's best friends. "We looked up to her, she accomplished so much."

"She has a feeling about her. You just know she's cool. You can automatically tell she's a really good person."