'We'd Do Anything to Save Our Kids'

WITH BOTH OF THEIR KIDS FACING A DEADLY DIAGNOSIS, JESSICA AND KYLE DAVENPORT RAISED MORE THAN $3 MILLION TO DEVELOP A GROUNDBREAKING PROCEDURE THAT MAY WELL SAVE THEIR LIVES

- CAITLIN KEATING

Not long after their son Kruz was born, Jessica and Kyle Davenport knew something was seriously wrong. He'd been born premature at 34 weeks weighing just 3 lbs., 6 oz.-but by the time he was 9 months old, there were added complications, including an extreme sensitivity to light and stunted growth. His symptoms worsened, and finally in June 2016-after two years and 10 different specialists-then nearly 3-year-old Kruz was diagnosed with a genetic condition called Schimke immuno-osseous dysplasia (SIOD), a rare and fatal form of dwarfism. Crushed and stunned, the Davenports had their daughter Paizlee, born a year and a half after Kruz, tested as a precaution. "There was a one-in-80-million chance that she would have it," says Jessica, 35. "And then she tested positive. All I could think was, 'I cannot lose both of my kids."

The Davenports soon discovered that SIOD affects only a few dozen people in the U.S. and Canada, causing kidney failure, a weakened immune system, skeletal dysplasia, migraines and a high risk of stroke and seizures. Faced with a life expectancy of just nine years for their kids and no cure, the couple took action-and in 2016 they launched their Kruzn for a Kure Foundation (kruznforakure.org). To date they've raised more than $3 million and established a research program at Stanford University School of Medicine dedicated to developing new treatments for SIOD. The lab is run by Dr. David Lewis, an immunologist and leading expert, and its groundbreaking work has already led to a lifesaving kidney transplant procedure called a dual immune/solid organ transplant (DISOT).