MESA — Guided by faith, an Arizona family is on a mission to raise awareness of and eradicate a rare genetic condition that impacts about 500 children every year, including their toddler son. Along the way, they also hope to bring comfort and support to other families whose children face life-threatening medical conditions.
“Our first goal is to raise awareness of non-ketotic hyperglycinemia because there is not a lot of funding for research into it,” said Chancee Culp, Lucas John’s mother. “There is no cure for NKH but with gene therapy, researchers believe they can cure and eradicate it.”
Culp’s son was born on March 6, 2018, and was later diagnosed with NKH, which is caused by a genetic variant.