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.