Analy High School grad fighting for her life

Olivia Weber grew up grateful that her older brother survived a long siege by a rare disease that almost killed him more than once.

She’s 24 now and dreadfully, mysteriously ill with symptoms utterly different from those that tormented her brother. Weber, a 2008 graduate of Sebastopol’s Analy High, hopes some of the nation’s best doctors will be able to determine what is happening to her and that she, too, will be healed.

Once a standout soccer player and runner, she’s largely debilitated by internal bleeding, an aneurysm in her pulmonary artery, blood clots in her lungs and paralysis of her stomach that makes it difficult for her to digest food. She lives with the fear that the aneurysm will burst or a clot will travel to her brain, and that will be the end.

“It’s taken over my entire life,” said Weber, who grew up in Sonoma County and was studying at UC Santa Cruz when frequent vomiting began her saga four years ago.

“I try to push myself to go on a walk,” she said. “I just don’t feel good. We just don’t know what’s causing everything.”

Her mother, chief attendant and advocate, Helen Weber, has mounted a crowdfunding campaign to raise the money she’ll need to drive Olivia across the country to be seen at the Mayo Clinic in Minnesota and Maryland’s Johns Hopkins Hospital. The Webers hope also that Olivia will be accepted into the Undiagnosed Diseases Program of the National Institutes of Health.

Helen Weber is a former Healdsburg resident who was living in Sebastopol when she found it necessary to be in Santa Cruz full-time to care and advocate for her daughter. She said the risk that a dramatic change in elevation might rupture the arterial aneurysm prevents them from flying east for the medical exams and tests they hope will produce a diagnosis or diagnoses, and a treatment strategy.

So they have to drive. Helen Weber has turned to Gofundme.com to attempt to raise $60,000 to cover the medical, transportation, lodging and other costs that they’ll incur on the trip. They plan to leave May 28. (The donation page can be found at ?gofundme.com/p3d2n8.)

Also on Helen and Olivia Weber’s wish list is a used but reliable SUV the likes of a Suburban or Yukon.

Olivia’s primary care doctor, Suzanne Ware, supports the Webers’ urgent quest to see if fresh eyes and specialized diagnostics at the Mayo Clinic and the other institutions can produce answers.

At this point, said Ware, who practices family medicine at the Santa Cruz arm of Sutter Health’s Palo Alto Medical Foundation, “It doesn’t seem like anything is really helping.”

She said she can’t administer anticoagulants to reduce the blood clots because the vasculitis that causes Olivia Weber - “a sweet, sweet young lady” - to bleed internally could turn fatal as her blood thins.

Despite years of effort at the Santa Cruz medical center, the UC San Francisco Medical Center and elsewhere to diagnose and treat the ailments that plague Weber, Ware said, her woefully poor quality of life has “just gotten worse, unfortunately, instead of better.”

Betsy D’Arezzo works as Weber’s home-care nurse and has watched the young woman deteriorate.

“It’s heartbreaking,” D’Arezzo said from Santa Cruz. “It’s imperative that she get a correct diagnosis that helps her get her life back.”

The nurse added that given all that Weber suffers, she’s remarkably buoyant.

“She really is amazing. She keeps up the fight and is positive. I don’t know how she does it.”

Grateful for all that Ware, D’Arezzo and others have done for her, Weber has amended her intent to resume her studies in botany and coastal geology.

“I’m going into nursing,” she said. “There are so many angels.”

For her primary angel, her mother, this makes twice that she has put her life on hold to champion and care for a severely ill child.

Olivia Weber wasn’t yet born when her half-brother, Jason DeStefano, abruptly fell so ill from a rare cancer in 1987, when he was 14, that a doctor told Helen Weber and her former husband, Peter Weber, that the boy was unlikely to live a day longer.

Helen Weber pressed for aggressive treatment that included potentially deadly radiation and replacement of her son’s bone marrow. He survived.

Nearly 30 years later, his mother has little time or energy available for grappling with why she and her second child now struggle for Olivia’s life. Someone has to lead that fight, Helen Weber said, “and that’s me.”

Chris Smith is at 521-5211 and ?chris.smith@pressdemocrat.com. ?On Twitter @CJSPD.