Childhood malady strikes Clayton girl

CLAYTON -- A rare genetic defect has a local girl fighting to ward off potentially fatal infections and her family is battling to cope with the added responsibilities that come with a sick child.

"Olivia is really reminding people that life is fragile and we need to make the most of every day," said Jen Menard, mother of 9-month-old Olivia Menard.

Olivia was diagnosed with Zellweger Syndrome shortly after her birth on February 7.

This rare genetic condition damages the white matter in the brain and adversely affects the body's ability to metabolize particular substances in the blood and organ tissues.

The disease is incurable. Most babies with Zellweger Syndrome don't survive the first six months. Olivia is currently the only child in North Carolina with Zellweger Syndrome.

"She was born through a scheduled cesarean and weighed seven pounds, seven ounces," Menard remembers.

Everything seemed fine, but soon Jen and her husband Chad realized that Olivia had lost a lot of weight. Once they got her to a scale, they realized she had lost 13 percent of her birth weight.

"She was terribly lethargic," Menard said. She and her husband have another daughter, Lila, who is four. Having an older child helped them recognize that something was amiss.

Doctors asked the Menards to feed Olivia two ounces of formula every two hours around the clock to try to boost her weight. "It took an hour for us to coax the two ounces down her," Menard said. "It was exhausting." It took six weeks for Olivia to reach her birth weight again.

Within four weeks doctors began a series of tests which ultimately diagnosed Olivia with Zellweger Syndrome.

"Olivia is doing really great right now," Menard said. "We are fortunate that she is able to swallow." She rattles off the litany of therapies Olivia receives through an early-intervention program. She also receives services through the Governor Morehead School because Olivia is blind.

"Our biggest fear right now is RSV," Menard explained. The virus causing RSV would be devastating for a child with Zellweger Syndrome.

"The preventive shots cost $3,000 a month," said Menard. About $600 of that is an out-of-pocket expense. In addition to the RSV shots, Olivia and her family travel frequently to Duke Children's Hospital where they meet with numerous doctors and therapists.

The family has received an outpouring of support from friends and local organizations. "The Me Fine Foundation has helped us pay for a portion of an RSV shot," Menard said. First in Families has provided some gas cards to help defray the cost of travel to Durham.

"We have great friends and family that are trying to help support us," Menard said.

Friends recently organized a fundraiser at Zaxby's Restaurants in Clayton and Smithfield to donate money to the family. On December 10 from 7 to 10 a.m. Andy's Restaurant at 12989 U.S. 70 Business will hold a pancake breakfast for Olivia and her family. Tickets are $5 and can be purchased by emailing age4a12@gmail.com.

"Jen and Chad are such amazing parents who are taking everything in stride," said Menard's friend Gail Lawhorn.

"We want to help them enjoy the time they have with Olivia without having to worry about (finances constantly)."

Despite her daughter's malady, Jen Menard says there have been positives.

"As hard as this situation has been for us, parts have been amazing," Menard said. "Olivia is touching so many lives and reminding us what is important."

People interested in donating to the Olivia Mae Menard Fund can send donations in care of KS Bank to P.O. Box 1178 Clayton, NC 27528.