This is part of the story that came out in the Herald and News today here in K Falls. Not everything is right on, but it's pretty close.


Feature of the Day
Beating the odds
Local couple both battling rare health issues
By JILL AHO H&N Staff Writer
When Jenae Bornamann closed her eyes, 18 people were in the operating room. She was awake for almost all of the surgery preparations. The last thing she saw was her doctor with scalpel in hand, ready to cut. It had been a difficult decision for her doctors: how to deliver her baby with the least amount of risk to both mother and child. Diagnosed with Ehlers-Danlos syndrome vascular type IV, an inherited connective tissue disorder, Jenae never meant to get pregnant. And she knew there was a 25 percent chance this pregnancy could kill her. But soon after she gave birth Dec. 5 by Caesarian section to Joshuah, a healthy baby boy, she had other worries.Her husband, Josh, was having trouble standing, sitting or walking without pain.Two weeks later, his legs were tingling and numb and he could barely walk.An MRI on Christmas Eve revealed a mass on his spine. The diagnosis: alveolar soft-part sarcoma, a rare form of cancer that develops in the connective soft tissues.Blessings, hardshipsDuring the last few years, Jenae and Josh Bornamann have experienced both blessings and hardships: they adopted a baby, and Jenae was diagnosed with Ehlers-Danlos syndrome, which killed her mother at age 39. But now — with a newborn baby — they faced Josh’s cancer diagnosis. He was not covered by health insurance. Jenae talked about the struggles one Sunday after church services at Living Faith Fellowship in Klamath Falls. The stress of the last few months had carved dark circles around her eyes. “It totally caught me off guard,” she said of the cancer diagnosis. “I’d set myself up for a crushed disc, even expecting back surgery. I didn’t know how to take care of him. I’d never had to take care of the guy.” Josh was flown Dec. 23 to Bend for surgery on his back. As she drove to Bend, Jenae thought of their last conversation: a fight.“I kept thinking about the last time I’d seen him,” Jenae said. “I’ve got to be there when he gets out of surgery.” Aftermath: After Josh’s emergency surgery at St. Charles Hospital in Bend, he was moved to Oregon Health Science University and then to a rehabilitation center in Beaverton. He is now back in Klamath Falls. The tumor on his spine caused extensive damage; he will struggle to walk again.“Telling him he’s not going to walk again is not an option,” Jenae said. Josh qualified for Medicaid, although the payments and treatments don’t seem to equal out. He has not been covered by health insurance since he and Jenae married. The couple planned to enroll Josh through Jenae’s employer this year, but they can’t do so until open enrollment in June. He may participate in a clinical trial conducted by OHSU, but he hasn’t decided yet. His attitude, Jenae says, is upbeat and faithful.“He’s doing so great. We’ve all got quiet times that are harder than others,” she said. “It’s not in his hands. He’s determined, independent and stubborn.”