A Dallas mother hopes her story will save the lives of premature babies around the world.
Her son died from a devastating disease that doctors don't know much about, but that's changing thanks to one woman's mission.
Jennifer Canvasser's son, Micah, died five years ago.
A wooden box and keepsake book details Micah's short life and the disease that killed him.
"We really thought we were preparing to being him home when he quite suddenly, within a matter of hours, developed this terrible intestinal disease," Canvasser said.
Micah and his twin brother, Zachary, were born at just 27 weeks gestation. Their bodies hadn't fully developed.
At six weeks, Micah developed what's called necrotizing enterocolitis, or NEC. His intestinal lining was dying.
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"I was really blindsided by the disease, and by the diagnosis," Canvasser said.
Doctors performed surgeries to remove the bad intestine, but the disease led to other complications.
Micah needed a kidney transplant.
"But we couldn't get him to gain the weight he needed to get the transplant," Canvasser said.
And at 11 months old, Micah lost his fight.
"That was a whole other level of devastation that I couldn't even fathom. And it took a lot just to learn how to live and eat and breathe again after losing Micah," Canvasser said.
Dr. Erin Hamilton Spence, a neonatologist at Cook Children's Medical Center, says premature babies are most at risk for NEC.
"It's one of the most devastating diagnoses," she said.
About seven out of every 100 preemies develop the disease.
"Even with surgery, a big portion of those babies don't survive," Hamilton Spence said.
And its exact cause is still a mystery.
"It is still something that we continue to investigate. It has something do with maybe the way the blood supply to the lining of the intestines is working, maybe the way bacteria find their way through that little dead intestine and work themselves inside of it and help the tissue die faster," Hamilton Spence said.
The doctor is working to shed light on the mystery. She's part of the NEC Society, an advocacy and awareness nonprofit Canvasser founded after Micah's death.
"It's so much more than Micah. It's about so many other babies that have been impacted by this disease and are at risk and will be impacted by the disease if we do not pull our efforts together and work together and collaborate and make significant advances in the disease," Canvasser said.
The mission is to save lives and cherish the ones taken too soon.
MORE: Click here for more information about the NEC Society.
