Families say sick kids need special care

When Gabriella Murata complained of numbness in her arms two years ago, her mother took her to the pediatrician's office and got right to the point, urging him to run blood tests for lupus, thyroid and rheumatoid arthritis.

Dr. Reynaldo Santos was more than a tad taken aback by her firm, but polite request.

But when Magali Murata detailed the family medical history, it made sense to Santos. After he learned from tests that the blood rheumatoid factor was present in Gabriella, he referred her to a specialist, who would refer her to another specialist, who referred her to still other specialists, who finally kept the 17-year-old alive with a kidney transplant.

"She saved her daughter's life because she was so on top of things," Santos said Wednesday. "She got sick pretty fast."

The family's determination to get things done should be invaluable next week when Gabriella, mother Magali, father Curtis and sister Erika recount Gabriella's brush with death -- and her ongoing struggle to stay alive -- to the Nevada congressional delegation in the nation's capital.

They are being flown to Washington, D.C., by the National Association of Children's Hospitals for its Family Advocacy Day, an annual event that draws patients and their families and hospital representatives from 20 states to lobby on behalf of children's health issues.

"I'm glad (Magali) is going to Washington to lobby for children's health care," Dr. Santos said. "I don't doubt she'll get something done. She even takes notes when she's in the office. She's difficult to say 'no' to. I'm glad she's on our side."

OUTSPOKEN ADVOCATE

Magali Murata, a floor supervisor at the Aria on the Strip, said she will speak her mind to Sens. Harry Reid and Dean Heller as well as Reps. Joe Heck and Shelley Berkley about proposed federal funding cuts to critical pediatric care concerns, including the Obama administration's plan to eliminate a program that goes toward the training of 40 percent of the nation's pediatricians and pediatric specialists.

"I'm no shrinking violet," said Magali Murata, who was battling throat cancer while her daughter's health deteriorated. "The problem we have in Washington is that they have no concept of what ordinary families go through when their children get sick. They need to know we don't have enough specialists for kids as it is now. ... It makes no sense to cut back."

Bipartisan legislation has been introduced in Congress to preserve $330 million a year for training of pediatricians. If the funding is cut, the Children's Hospitals Medical Education program will end on Sept. 30, although President Barack Obama has promised to increase funding for general physicians.

But Dr. David Gremse, who is joining Tuesday's lobbying effort as chair of pediatrics at the University of Nevada School of Medicine, argues that children "are not just small adults."

"You need specialized training," he said, "to provide quality care to children."

COMPELLING ARGUMENT

Gabriella's case provides compelling support for Gremse's argument. Karen Gordon, pediatric services coordinator at University Medical Center, and Brendan Bussmann, the hospital's director of community relations, who will also lobby in Washington, feel certain that legislators will be moved by what she and her family have gone through.

Santos referred her to Dr. Lisa Majlessi, a California pediatric rheumatologist who flies each month to Las Vegas to see patients. She treated Gabriella for the severe form of arthritis, but after a few months, the Centennial High School student's kidneys started to fail.

Gabriella then was referred to Dr. Hay Cheam, one of only two active pediatric kidney specialists in the valley. For reasons that he couldn't determine at first, the teenager's immune system was targeting healthy tissue, causing widespread inflammation.

For awhile, medication appeared to bring back kidney function, but then she relapsed and had to go on dialysis. At one point, she ended up in a wheelchair. Once, she had to be taken to UMC for emergency kidney treatment.

"You can't imagine what it's like not to know what's happening to your daughter," Magali Murata said.

After a year of treatment, Majlessi and Cheam determined that Gabriella had a rare disorder known as Churg-Strauss syndrome.

"It's very difficult to diagnose because it has many of the symptoms of other things," Cheam said.

Scientists don't know why it occurs, but the rare condition is marked by blood vessel inflammation that can restrict flow to vital organs and tissues, sometimes permanently damaging them. The disorder generally hits people between the ages of 38 and 52, far older than Gabriella.

The syndrome has no cure, but doctors can help control symptoms with steroids and powerful immunosuppressant drugs. Gabriella takes 10 different medications, a total of 29 pills a day.

The first stage of the syndrome is marked by a number of allergic reactions including asthma, which Gabriella was diagnosed with as a child.

Asthma generally develops three to nine years before other symptoms, such as the joint and sinus pain she encountered as a teenager.

Sufferers have an overactive immune system, and the syndrome can systematically shut down vital organs, such as the heart, lungs and gastrointestinal system.

KIDNEY TRANSPLANT

Gabriella's immune system attacked her kidneys. When it was clear she'd need a kidney transplant, her sister Erika stepped up.

"The family is incredible," Cheam said.

Last month, one of Erika's kidneys was harvested during an operation at Lucile Packard Children's Hospital at Stanford University and implanted in Gabriella. The sisters have already recovered from the procedures.

The transplant and the tests required in its aftermath are something that Magali Murata plans on discussing with the congressional delegation.

"We wanted to get the transplant done in Las Vegas, but our family's insurance would only let us go nine hours to California," she said. "What sense does that make? And now when we get blood drawn for Gabriella all the time, we have to get it drawn in two different places. It makes no sense. It's time to think about families."

Cheam said he thinks about the Murata family all the time.

"The mom didn't want the daughter to know about her cancer problem (in her throat) at the time she was going through her ordeal," Cheam said. "They had so much stress at the time. The grand­father was also very ill. But they stuck together."

Cheam said the problem with Churg-Strauss syndrome is that the disorder can attack at any time. And the kidney transplant is only good for 10 to 20 years.

"When they hear their story in Washington, they'll understand why we need all the pediatric specialists we can get," Cheam said. "We're fortunate we determined what this was when we did. My associate and I are run ragged going to all the hospitals in Las Vegas. We have too few now."

Gabriella said she'll tell politicians not to cut federal funding for Medicaid, the chief insurer for children. She also has one question for Nevada's congressional delegation:

"How do you expect children who get sick to get better if there aren't trained pediatricians to care for them?"

Contact reporter Paul Harasim at
pharasim@reviewjournal.com or 702-387-2908.