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KELLER (CBSDFW.COM) — Christina Gregory is one of four children in North Texas living with congenital central hypoventilation syndrome, a rare genetic disorder. Not much is known about CCHS, but a charity run on Sunday raised nearly $50,000 for research.

More than 500 runners participated in “Runners at Play — Fun Running for Everyone,” a fundraiser hosted by Fit4Mom, a company that specializes in fitness plans for mothers, and Dallas Athletes Racing, according to the press release. Participants paid an entry fee to cruise through a 1-, 4- or 8-mile run. The nearly $50,000 came through sponsorships and direct donations, which will go toward funding CCHS research.

CCHS causes people to take shallow breaths, depriving their bodies of oxygen. Approximately 1,200 people in the world live with CCHS, including Gregory, whose mother is a member of Fit4Mom.

(Photo courtesy of the Gregory family)

(Photo courtesy of the Gregory family)

Gregory has one of the most severe versions of CCHS and requires 24-hour ventilation support, the press release said. Due to the disorder, Gregory has no colon, needs a gastronomy button, a tube inserted directly into her stomach through which she receives formula and medicine, and receives respiratory treatments.

The 1-year-old lives in Southlake with her parents and older sister. Each morning, Gregory’s parents move her and the equipment from her crib to the living room, where she stays until bedtime. There, they take care of her medical needs and play with her throughout the day.

“Christina’s CCHS has made us more aware of the fragility of life and that there’s not always a guarantee that any of us will wake up tomorrow,” Gregory’s parents, David and Natalie, said in the press release. “She has taught us to love fiercely, monitor diligently and live fully.”

Nurses help tend to Gregory 23 hours per day, seven days per week — especially at night. She has no respiratory drive while asleep.

According to the press release, “Her brain forgets to tell her body to breathe.”

For more information on the run and Christina Gregory, head to the Dallas Athletes Racing website.

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