Girl waiting in limbo for medical research that may save her life

One semi-functioning kidney and a lot of hope keep Amanda Stewart alive.

But the kidney isn't doing so well, and the hope is bankrolled in experimental research $97,000 away.

"If she loses the kidney, she'll be on dialysis for the rest of her life," said family friend Lynn Giles. "The best possible outcome for her is that she could live until 35."

To begin the experimental research and find out why nephrotic syndrome, a disease which attacks the kidneys, is at work in Amanda's body, the family needs to raise $100,000.

The research will be done on the 10-year-old's identical twin, Jessica.

Amanda, who was diagnosed with the disease in spring 2002, once attended Seeliger Elementary School with Jessica and older brother, Jacob. Amanda's grandparents still live in Carson City.

Amanda's Linda Loma, Calif., doctor hopes to compare proteins in the girls' bodies to see what has gone awry in Amanda's. It is not clear what the disease is nor how exactly it spreads.

Giles, a friend of Amanda's mother since seventh grade, has a theory though.

"For some reason, every kid who has this seems to have experienced a really bad case of the flu or the strep throat," she said. "For some reason, that lowers their immune system and the disease just awakens."

Amanda had a severe case of the flu before being diagnosed with nephrotic syndrome, she said. "Nephrosis" refers to the kidneys.

"There's a doctor who has done this type of research for adults," said Giles. "It has not been done on children. In this case, it can be done especially for Amanda to compare her twin to her."

The Stewarts recently followed their doctor from Lucile Packard's Children's Hospital in Stanford to Linda Loma University Children's Hospital, both in California.

"The faster we get the money, the faster they'll be able to do the research that they need and possibly find a cure and work with the existing kidney," Giles said. "The longer we go, the better chance we have of losing this kidney."

Amanda responded to the typical treatment of Nephrotic Syndrome by having seizures to the steroids. She has been exposed to carcinogenic medications in a search for treatment.

Seven months after her initial diagnosis, doctors removed both of her kidneys, which had becoming excruciatingly painful and doubled in size. Five months after that, she received a kidney transplant. Her body began attacking it the day after surgery. Her growth has been stunted, she is often puffy from medication, and she is in and out of the hospital.

Last year Krystine Redmond, then a 9-year-old fifth-grader at St. Teresa of Avila School, organized a penny drive to help Amanda. Krystine, who suffers from the same disease but has progressed to live a functional life, raised about $4,000.

And 11Ú2 years later, Amanda's kidney is functioning with the help of a dialysis-like process that cleans out the organ three times a week. If the kidney fails, the 10-year-old will be put on dialysis.

"I don't think they'll give her a new kidney," Giles said.

A little more than $3,000 has been raised in the past months. Insurance does not cover the research.

- Contact reporter Maggie O'Neill at moneill@nevadaappeal.com or 881-1219.

You can help

$100,000 Amanda Stewart Research Fund

• To date, more than $3,000 has been raised.

• To help, send checks to Washington Mutual, For the Benefit of Amanda Stewart, account No. 489-071992-0, 16861 Bernardo Center Drive, San Diego, CA 92128

• For more on Amanda, see the Web site amandas-story.org.