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Utah couple races to help son with unique genetic disorder

Dogged SLC parents are hopeful science can help their 4-year-old boy, diagnosed with a unique, deadly health condition.

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She’s his biggest fan, said Cristina. She’ll sometimes wake to see Victoria has left her crib, snatched his iPad from the bookshelf and hopped into his bed to watch videos with him.

Victoria can tease a smile from him, sometimes a grimace.

At a glance

By the numbers

22,000 » Each person’s number of genes, which make up his or her DNA, the genetic blueprint for human life.

More than 3 billion » The number of “base pairs” that determine genetic makeup.

$3,000 » Cost to sequence a family’s exome, 2 percent of each member’s DNA.

$20,000 » What one family in the Duke study that diagnosed Bertrand spent on dead-end diagnostic tests.

$75,661 » Four years of the Mights’ out-of-pocket health expenses.

$3 billion » Cost of the Human Genome Project, begun in 1990 and completed in 2003.

Help find a cure

To donate to the Bertrand Might Research Fund at Sanford Burnham, go to: http://bit.ly/QbCUDO

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But, at 18 months, she talks more than he ever has or maybe ever will.

The family’s routine is a blur of hand-fed meals, baths and diaper changes. There’s the hourly eye drops to lubricate Bertrand’s unblinking eyes, and daily in-home therapy sessions to build his motor control.

His condition is still likely fatal.

"But I prefer to think we’ve finally reached a kind of peace," Cristina blogged in September. "We’re comfortable with doing what we can rather than obsessing about what we can’t." Maybe it’s finally having a diagnosis, or knowing what they’ve found will benefit other families, she said.

Matthew continues to talk about making "new dents in the boundary of human knowledge." Watching his son loaded onto the bus, he said he’s confident there’s a 50 percent chance they’ll find a treatment.

"We need to do more pushing on the science," he said. "We’re almost there."

kstewart@sltrib.comTwitter: @kirstendstewart

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