Honoring Her Wishes


Cherese Laulhere died before she could see her baby goddaughter.

But Laulhere's legacy, a foundation to benefit children with problems, is touching the dark-haired girl today.

Laulhere and four other Americans perished when their bus overturned en route to the Taj Mahal in March of 1996.

A 21-year-old UCLA senior, Laulhere was to travel next to the Philippines to continue her Semester at Sea studies, where she would have seen the photos of goddaughter Olivia Niro, born just the month before. The pictures had been sent by Olivia's mother, a childhood friend of Laulhere.

In their grief, Laulhere's parents vowed to carry out their daughter's dream of making a difference in the lives of children. Who better to help than Olivia, who was born with nasal dysplasia, a malformation of the nose and surrounding tissues?

Chris and Larry Laulhere of Long Beach established the Cherese Mari Laulhere Foundation, which has given $6,000 to Children's Hospital of Orange County, where Olivia has undergone extensive treatment since she was days old.

"We thought about Olivia and how Cherese would have touched her life," Chris Laulhere said. "And I thought, what better way to keep them pulled together."

CHOC in Orange has matched the $6,000, which has gone to the hospital's cleft-craniofacial program, the only one of its kind in Orange County to treat children with birth defects of the palate, face and skull.

The program treats primarily children born with cleft lip or cleft palate, malformations of the mouth that occur about once in every 1,000 births. Other patients include children with craniosynotosis, a condition in which the plates of the skull fuse prematurely, before birth. To allow for growth of the brain, the skull normally does not fuse until a person is about 18.

The CHOC program brings together a team of doctors, headed by pediatrician and geneticist Dr. Touran Zadeh, to help the babies and their families through the medical and emotional difficulties.

"It's very hard on families when a child is born with facial problems and looks different," Zadeh said. Parents often feel shocked, saddened and anxious about the baby they had anticipated to be the picture of health, she said.

Treatment for a cleft palate does not end with reconstructive surgery on the lip and mouth, Zadeh said.

"You have to ask, 'What effect will it have on other functions?' " she said. Children with cleft lip or palate tend to have fluid collect in their middle ears, leading to infections and hearing problems, she said. They have speech problems and teeth grow improperly, she said. Orthodontic work, surgery on the gums and placement of tubes in the ears are necessary.

Members of the team include plastic surgeons to reconstruct the mouth and palate; a craniofacial surgeon for more extensive facial surgeries; neurosurgeons; ear, nose and throat specialists; orthodontists; speech therapists and audiologists.

In addition, a nurse specialist, Carol Ursich, works with newborns and their parents to solve feeding problems, and a social worker helps put the families in touch with support groups and addresses emotional issues, Zadeh said.

About 25 years old, the CHOC program now has about 1,200 patients ranging from newborn to 21 years old. All children with cleft or craniofacial abnormalities are accepted, regardless of their families' ability to pay, Zadeh said. The family of a former patient provided a grant that helps cover costs not paid for by insurance, she said.

The Cherese Mari Laulhere Foundation grant is the first donation that can be used for research into craniosynotosis and other abnormalities, Zadeh said.

Recent research has determined that certain genes are involved in the premature closure of the skull sutures, she said.

"It's very important to do genetic testing on these cases. We need to try to clone the gene, to see if anything can be done" to diagnose the conditions before birth, Zadeh said. Prenatal ultrasounds do not detect the problems, she said.

One of Zadeh's patients is Olivia Niro, who underwent surgery in November to remove bone from her forehead, bring her eyes closer together and remove a "skin tab" on her forehead. She might need additional surgery on her nose in the future, said her mother, Sophia Pen.

Olivia also had two surgeries--not performed by the craniofacial team--when she was 4 and 9 months old, to separate her webbed fingers and toes, she said.

CHOC was the second beneficiary of the Cherese Mari Laulhere Foundation. The first donation went to Long Beach Memorial Medical Center, where Cherese Laulhere was born. The gift is being used to purchase a machine that will help keep children alive as they await kidney transplants.

Cherese Laulhere had been adamant about wanting to be an organ donor, said Chris Laulhere, who sports an ever-present angel pendant she gave her daughter on her last Christmas.

"That didn't get to happen, but this will help kids in the very same way."

The next foundation gift will be to CHOC's pet therapy program, which brings specially trained dogs into the hospital to visit the children and boost their spirits.

"To my daughter, animals were the same as people," Laulhere said. The family also is contemplating a donation to a shelter for battered women with children.

The foundation is funded mainly with money Cherese Laulhere left behind. The Laulheres and families of other bus crash victims have wrongful death lawsuits pending against the University of Pittsburgh and the Institute for Shipboard Education, sponsors of the Semester at Sea. Any judgment or settlement from the lawsuit, Laulhere said, will go to the foundation.

The donation to CHOC's cleft and craniofacial program, to assist children like Olivia, helps ease the loss, said Pen, Olivia's mother.

"Cherese was the most genuine, sincere person with the biggest heart. I know what an impact she would have had in Olivia's life," Pen said. "This keeps her in her life."

More information about the Cherese Mari Laulhere Foundation is available on the Internet at http://www.cherese.org/.

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