CAMBRIDGE, Mass. --Sonia Vallabh and Eric Minikel were still pretty much newlyweds when they found out they would never grow old together.
Five years ago, doctors told Sonia she carried a genetic mutation for an incurable disease known as genetic prion disease, a painful, rapidly progressive form of dementia.
"We think we might have about 20 years. That's our best guess, but there are no guarantees there," Sonia said.
Dead by 50 -- that's the medical reality for now. But they didn't stop there, "because that wasn't okay,"Eric said.
Eric said they realized that if they wanted this disease cured, they might just have to do it themselves.
Never mind that neither one of them knew a thing about medicine. She was a recent law grad and he worked in transportation technology, but they knew how to use Google. So that's where they started.
They typed in "genetic prion disease" and learned what they could from Wikipedia. Then they took night classes in biology, got accepted into a Ph.D program at Harvard, quit their old jobs, and started working as researchers at the prestigious Broad Institute in Cambridge, Massachusetts.
"They are now full, card-carrying scientists," said Eric Lander, director of the Broad. "They really came in with a total plan of all the possible options because failure is not one of those options."
Husband and wife now stand side by side, everyday pushing closer to a cure."We really think this is doable," Sonia explained.
By all accounts, they are well on their way to becoming leading experts in the field. In fact, they're already so well respected, Sonia was recently invited to speak at medical conference with the president.
And if they are successful, they will not only save Sonia's life, but the lives of the more than 7,000 other people who die every year from this disease.
It would be huge a medical story. And yet, for the woman at the center, no matter what happens, this will always be a love story.
"I think it's just the miracle of my lifetime that we met. Even if we cure this disease, that will always be the great miracle for me."
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