"His doctor initially said to wait, because kids develop at different rates,” said Jamie, a grants administrator at Duke. “But at about seven months, she said, ‘OK, I’m concerned now too.’”
Months of appointments, tests, and meetings with specialists soon followed. Meanwhile, Quinn needed constant care. He had seizures. He cried for entire days. Liz and Jamie traded shifts, but there was never enough sleep, never a respite from the stress of knowing their child was seriously ill, but not knowing why.
“We were just surviving,” said Liz, a Duke nurse. “Quinn was so miserable I couldn’t even take him out of the house. You’re sleep-deprived, housebound, and you don’t know what’s wrong with your child. We were really struggling to take care of Quinn and ourselves.”
At the end of all those tests, Liz and Jamie still didn’t know what Quinn had. And they didn’t know whether they could ever have more children without risk.
“Then our genetics counselor said, ‘Have you heard of the Undiagnosed Diseases Network at Duke?’” Jamie recalled.