Nataline Sarkisyan died five years ago after her family s insurance company initially refused to grant her a liver transplant. (David Crane/Staff Photographer) -->PORTER RANCH - They weep still for their blue-eyed Nataline.

Their tears flow for what they remember: Their daughter in her room, the pink walls decorated with posters of the Jonas Brothers. They see her there sketching in a notebook the dresses and blouses and jackets she would one day like to design.

Nataline Sarkisyan died in a UCLA hospital bed on Dec. 20, 2007. She was 17. Her story drew nationwide attention because the liver transplant she needed was denied by her family's health insurer, CIGNA.

For Hilda and Krikor Sarkisyan, who live in Porter Ranch, anguish remains for the daughter who never came back to her pink room. But so too does their determination to keep Nataline's story alive, to save others.

The family established the Nataline Sarkisyan Foundation, and since then has organized an annual fashion show to raise scholarship funds for students interested in the arts and medicine. The fifth annual show is scheduled for this weekend in Calabasas.

They also continue to implore lawmakers to change a federal law that prevented them - and will stop other families - from suing CIGNA and other health insurance carriers for refusing to pay for treatment.

"I am not a politician. I am not a nurse. I am not a doctor," Hilda Sarkisyan said as she sat in the living room of her home, where a large portrait of Nataline hangs over the fireplace.

"I am a mother," she said. "As a family we made a commitment. We want the whole world to know her story because Nataline's story will make change."

Hilda Sarkisyan said her life's goal is to repeal a provision of the Employee Retirement Income Security Act of 1974 that protects insurance companies from being sued for lack of coverage.

Flanked by power attorney Mark Geragos, the Sarkisyans tried to sue CIGNA shortly after Nataline's death. But with ERISA in place, they were unable to touch the insurance provider.

The provision is so tightly ingrained into the way health insurance works that even President Barack Obama's extensive health care reform bill couldn't touch it, said Wendell Potter, the former vice president of corporate communications at CIGNA, who resigned from the company in 2008 and later testified against it as a whistle-blower.

Potter even came to the Sarkisyans' home, and on national television, apologized to the family.

"The Sarkisyans' case highlighted a broken system that exists and continues to exist," Potter said.

It was Nataline's story that brought the health care crisis to the forefront - and she already has helped millions, Potter said.

She had been diagnosed with leukemia at age 14. After two years of treatment, the cancer went into remission. But in the summer of 2007, it came back and doctors said Nataline could use a bone-marrow transplant. Her only sibling, 21-year-old Peter, was a match, and he donated his bone marrow the day before Thanksgiving.

But the teen developed a complication and, because her liver was failing, doctors recommended a transplant, saying she had a 65 percent chance of surviving.

CIGNA denied the transplant, telling doctors in a memo the procedure was "experimental, investigational and unproven services."

After the family went public, health advocates, the California Nurses Association and the Armenian National Committee organized protests at CIGNA offices.

Hilda Sarkisyan runs a foundation in the name of her daughter, Nataline Sarkisyan, who died 5 years ago after her insurance company would not grant her a liver transplant in time. (David Crane/Staff Photographer)

CIGNA reversed its decision and approved the surgery, but the girl died just hours later.

"I think the Sarkisyans' story, the tragedy of Nataline's death, inspired a lot of health reform advocates to push forward," Potter said. "Nataline became a face in so many ways of what Americans face in health care."

Some agree with Potter. Nataline's story showed "the contentious relationship between physicians and health insurers," said Shana Alex Lavarreda, director of Health Insurance Studies and research scientist at the UCLA Center for Health Policy Research.

"Both sides blamed the other," she said. "Doctors were saying, we would love to do this procedure, but we can't. The insurer said, we don't think it's medically necessary."

At the end of 2007, when Nataline passed away, every Democratic candidate was talking about health care reform. Then presidential candidate John Edwards even evoked Nataline's case as an example of a broken system, Lavarreda said. Her story exposed other abuses, too, such as recidivism, or when insurance companies drop a patient after they become too sick.

"The bad thing that happened to (the Sarkisyans) enabled the rest of the country to see just how bad it was," Lavarreda said. "It highlighted the weakness of the system and had a big effect on part of the package of the Affordable Care Act."

CIGNA this month did not respond to a request for comment on Nataline's case, saying the company does not respond during pending litigation. Hilda Sarkisyan has filed a complaint against CIGNA, not directly based on her daughter's death because that would be precluded by ERISA, but stemming from an incident in 2009 in which she alleges mistreatment by a company employee.

But even with the U.S. Supreme Court's recent backing of Obama's Affordable Care Act, Nataline would have suffered the same fate.

"The Affordable Care Act does a lot of good things, but it doesn't address every problem," Potter said. "It does not keep situations from happening. The news media and public officials do not fully understand how dysfunctional a part of our health system is that keeps hurting families like the Sarkisyans."

Potter said while ERISA was passed with good intentions to protect employers and employees, insurers have interpreted its various provisions to their advantage. "The corporate world was able to make sure ERISA was not altered in any way," Potter said, of healthcare reform.

Hilda Sarkisyan said she knows fighting ERISA will take all of her strength. But she has the will and the motivation, she said.

"I lost my child," she said. "They took my child away from me. You could say they even killed my child."

She, Nataline's father, Krikor Sarkisyan, and the family also are busy organizing the final touches for the fifth annual Nataline Fashion Legacy, a show the family holds to benefit the Nataline Sarkisyan Foundation.

The event is always held in July, for Nataline's birthday and to also remember her dream of becoming a fashion designer. Each year, one of the 22 sketches of outfits that the Sarkisyans found in her notebook is designed and previewed at the event. The event will be held Saturday at Mercedes-Benz of Calabasas.

A company called HobbyTron.com also is working on dolls that resemble Nataline, wearing replicas of her designed creations. Those will be available in the future.

Hilda Sarkisyan said she will always work to keep Nataline's story alive, so that lawmakers and the public will all work together to make the health care industry change their policies to help people, and so that her daughter's sparkling blue eyes will always be linked to saving lives.

"When she passed away I had a vision of the future," Hilda Sarkisyan said. "I am determined to keep her story going."

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