The family moved from Arizona to live with Kremis' parents in San Marcos so they could to be close to the pediatric cardiology team at UCLA. Kremis' husband, Richard, landed a job with AT&T. They have decent insurance, but with a high deductible, so that the boys can stay with the same specialists who oversaw the transplants.
"Has it affected our family? Yeah, but it's just life," said Kremis. "It doesn't make our problems worse than anyone else's. It just means when it comes, you just deal with it and you move on."
Deanna Kremis' grandmother, a no-nonsense outdoorswoman from Alaska, wasn't diagnosed with the condition until she was in her early 70s. When Kremis was pregnant, her grandmother told Kremis to get her children's hearts checked before they played sports — but said nothing more.
Her first son was healthy but when Matthew was born, doctors said he wouldn't live past age 10. The family had to learn CPR just to take him home. His lips and nail beds were blue and his skin was so pale the veins in his chest and stomach popped through "like a see-through kid," his mother said.
"They just told us to take him home and cherish him," she said. "He's been on medicine since the day he was born and he's still on meds. It's been his whole life."
Doctors checked Trevin for the condition in utero, at birth and then every three years. The tests were negative until he turned six.
Within a year, Trevin needed a transplant — just as Matthew's health spiraled out of control.
"We didn't really know the extent to what it was in our family until after. We didn't know how it affected siblings and how many siblings would be affected. You know, we just didn't know any of that," Kremis said, brushing away tears.
Donor hearts don't last forever, but doctors haven't given the trio a life expectancy. The Kremises prefer to focus on the future.
Matthew, now a high school senior, will study auto mechanics at a trade school next year. Trevin skateboards and has a passion for rebuilding electronics and repairing motorbikes. And the boys love dirt-biking with their father and older brother — a hobby their doctors don't like, but haven't forbidden.
"How many people can say that they've been through what I've been through and go ride dirt bikes for fun? There's not a lot of people like me and my family," said Matthew Kremis.
"It's really part of what makes my family so awesome. All we really have is each other."
Follow Gillian Flaccus on Twitter at http://www.twitter.com/gflaccus
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