September 2026

Olivia is finally diagnosed.

We are waiting to find out more about possible treatment.

Pls see Autumn update. Thank you

~ Archive follows ~

Spring 2026

Olivia's Story

As mom and daughter, we are trying to find our way forward to a diagnosis for Olivia. The reason is because only then can she be treated. We never had a clue this could happen. Her symptoms have ramped up the past 6 months, leading specialists at Stanford and UCSF to believe she has a rare auto-immune illness. But, which one? We desperately need to know so she can be treated.

Meanwhile, it is in her spine now, and she is both unable to walk and never without pain. Cells spill over into her bladder, making it look like a massive UTI infection when it isn't. We used to think wow, all we need is diagnosis but now we've realized that in order for that to happen, she had to become more ill in order for it to be identified.

Life seeking diagnosis has been complicated. It's mixed up with specialists, tests, hospitalizations, hopes, worries, travels and a worrisome, ongoing lack of affordability.

And - always trying hard to find answers while Olivia remains bedbound and on an IV 24/7. The search hasn't been easy.

The support we have received here at GoFundMe has been wonderful. We give our huge thanks to all.

......

Here is O's Story:

At age 21 while in her 3rd year of college in Santa Cruz, Olivia became critically ill after taking a routine prescription of Amoxicillan. Whether that situation was the catalyst or representing a core issue, is still unknown. She bled internally and was hospitalized off and on for the next year, due to her stomach becoming paralyzed. An aneurysm was next discovered in her pulmonary artery, and multiple blood clots were found in her heart and lungs. She developed pulmonary hypertension (CTEPH), and at age 25 the blood clots were removed during a rare, dramatic lifesaving surgery performed at UC San Diego. Seizures began, then. And Olivia has, ever since, required a central line (IV) for both meds & nourishment due to her stomach being paralyzed.

If we had a label for this.. if she was specifically diagnosed, life would balance out and O would enjoy normalized, dedicated treatment. Diagnosis is what we ever hope for. Meanwhile, new symptoms occur, requiring newly focused medical attention. One of the new symptoms is horrific pain, edema and inflammation in her spine - making it hard for her to walk. All this is visible on CT and MRI scans, but it is unclear exactly what 'it' is. We are open to all suggestions - please contact us if this all sounds familiar to you.

UCSF and Stanford agree that her symptoms are likely arriving over time and out of order, making the situation incredibly confusing. There are 2 main 'players': rare auto-immune and rare Ehlers-Danlos (EDS) which would explain her recently-discovered heart valve issues as well as blood vessel oddities.

Across medical facilities, Olivia has a fine medical team. But without diagnosis, there's no dedicated treatment plan to follow, therefore her care is piecemeal, so to speak. This complicates everything - from medical care to insurance claims. And it can be confusing for doctors who are new to Olivia, to treat emergencies without understanding what's wrong and 'why'.

Health care is becoming increasingly tough as it is, but it is also so compartmentalized now: you see one doctor for this and another for that, sincerely hoping they all read the updates and summaries. But I worry: how long is this supposed to continue, and why can't 'they' figure it out?

We are alone in life. We desperately could use help with the many extra costs associated with Olivia's appointments and emergencies. Gas, food, overnights. Car upkeep.

Please help us keep going.

The core reason for this campaign is because of the enormous ongoing expense of continued care. We are tough, we are in it to win it, but financially it's pretty hard due to Olivia's out of pocket medical expenses.

If we can no longer afford her medical needs, piecemeal care will be all there is. Meanwhile, her life continues via IV. It is her lifeline.

We thank you very much for reading Olivia's story -

Warmly,

H & O

........

Past updates follow:

Importantly, this longtime fund's balance is actually at zero. It however retains and shows a *cumulative total* figure from all past donations over the years.

It showcases past donations 'rolling by' as new ones, when they instead happened long ago. Please be assured - I would not be asking for help if those figures were current. It is, however, GFM's way of encouraging donations, but for our small campaign, it is quite misleading and discourages them. Oh, well. We remain very grateful to GFM, and to you.

We only come to GoFundMe when we need serious help.

We are mom & daughter alone without family, and continuously dealing with Olivia's extraordinary medical expenses.

We both thank you for reading O's story.

.....................................................................

A age 21, Olivia was a young, academic scholar - a soccer & track athlete loving life and busting fast through college at UC Santa Cruz as an Environmental Science major. Out of the blue, just after her 21st birthday, she had a critical medical emergency, an antibiotic drug reaction that started with internal bleeding. She was hospitalized for many weeks.

The illness is serious yet remains unidentified, although more symptoms have appeared. It has been life-threatening via damage to her heart & lungs, includes a rare bone tumor, seizures, swollen joints, severe gastroparesis and recurring anaphylaxis. Importantly, she is unable to either digest food or keep it down. This is called "gastroparesis". She has debilitating joint pain, rashes, vision issues, vasculitis and disabling spinal pain. It is long thought that she has either Behcet's Disease or Ankylosing Spondalitis - both are auto-immune diseases.

Olivia has required a central line (IV) since this illness started in 2011. It is replaced every 3 months. Through the IV, she receives both nutrition and medicines that help.

Olivia's extremely serious symptoms are collectively not yet understood, so by writing about her, we hope you might respond to us regarding anything that might be recognizable to you.

We could never have made it this far without the generosity and kindness of so many people who have kept us going through this GFM campaign.

We are always seeking answers.

We thank you very much for reading O's story. We thank you for any help possible to soften this very tough situation. Olivia just wants her life back, but she's also very grateful to be alive. In 2023 we lost her brother Jason, who shared a lot of her symptoms. We thank you again for reading Olivia's story.

Warm wishes,

Helen & Olivia

Trusty mirror-selfie at Stanford/2023

History:

Olivia's Golden Retriever Mo was her best friend throughout the years. From 2009 until 2023 when she sadly passed, she kept guard over Olivia day and night.

O with Mo - Stanford 2018

»-(¯`v´¯)-»

Youtube video of Olivia & her Golden Retriever Mo:

https://www.youtube.com/watch?v=bC6TQUaMD_s

Photos and story:

Below, March 2022: a physician at another hospital accidentally injected a steroid shot into bone, consequently giving O a very critical infection - she ended up hospitalized at UCSF for several weeks with sepsis.

That's the hard thing: it's dangerous being sick, and it is risky being around hospitals so much.

This situation was the worst.

Below, O brings her blankets, pillows and 'stuff' when she goes into the hospital

Below:

Olivia has been sick for so long that her friends have all moved on with their lives. She is however always optimistic and looking forward, but sometimes it's all just too much

Below: Christmas 2020 - sepsis yet again at UCSF - Olivia had a blood infection and could not tolerate light or sound

Below at UCSf/2023

To receive meds and some nourishment, Olivia has used a central line (heart catheter) since 2011. It is cared for by UCSF.

She just really really really wants to have her life back. We are constantly seeking answers. In this regard, we are thankful for Ai as a new resource, hopeful it will eventually render answers.

Above: March 2019

»-(¯`v´¯)-»

Olivia is always upbeat and ready to feel better. She wants to return to college, finish her degree and live her life. Before the illness, she was a fast-track student athlete majoring in Biology and planning her graduate work.

We never saw this coming.

Below: Pulmonary Thromboendarterectomy / UCSD Jacobs/Sulpezio - Fall 2017. UCSD built a hospital for this rare surgery that removes blood clots between lungs and heart

Below: ICU. First walk five days after having Pulmonary Thromboendarterectomy at UC San Diego Jacobs/Sulpezio - Sept. 2017

O has a permanently damaged lung, but she's very grateful for having had this lifesaving surgery.

Just after this surgery happened, a very rare bone tumor was removed from Olivia's left pelvis.

Below-

Just out of the ICU on 9/20/17, she is pressing against her full sternum incision, using a teddy bear instead of the standard pillow.

Imagine all this happening, but no one knows why. Not knowing 'why' has always been the most challenging part. The medical profession is simply not set up for dealing with a lack of diagnoses or treating rare illness. Having a 'label' or defined reason for being ill is the norm. We keep seeking answers. But we never know 'why' certain symptoms happen, or what could be next.. because there's no label yet to identify what 'this' is.

Olivia has had many surgeries

She spent a long time on oxygen

This is how I usually see my precious daughter - too sick to participate

Olivia was always a healthy, devoted scholar & lifetime athlete. Despite becoming sick, she made it to her 3rd year of college in 2012. When illness hit, she was forced to take a medical leave. Now it is 2025 and we still do not know why she is so ill. We don't have infinite funds to support this.

Before her illness, O played soccer, backpacked with friends and rode her mountain bike 25 miles every day. She so very much wants to return to school and resume her life.

She maintains a powerful spirit and believes she will get through this!!

Above: at age 8, far right in blue. Sebastopol, California, 1998

Below: age 20 wearing jersey #28, and in the following image wearing jersey #16. With The Patronas women's soccer team while at UC Santa Cruz, six months before the illness hit:

Olivia with her precious, fabulous, always-smiling Golden Retriever pal "Mo" (below at UCSF) who sadly passed away at age 14 in Feb. 2023. A loving duo.

Below: Prior to Covid, O's trusty Golden Retriever Mo really did watch over everything!!

Some hospitals encourage a patient's dog, like Mo, at bedside. UCSD does this even in the ICU for certain folks - we know this, because they allowed it. They believe it is healing for the patient. Another hospital that has longtime allowed and encourages it, even going so far as building a connecting dog garden and patio, is Johns Hopkins in Baltimore. Healing - matters. And for Olivia, her close relationship with her Golden Retriever means everything.

The overall situation for Olivia is serious & ongoing -- we thank you for any help and support possible.

(Above - Photo: Yosemite, 2010, before the illness)

Gratefully,

Helen (mom) and Olivia Weber

Link: "Heart and Mind of a Champion": Jim Seimas. Santa Cruz Sentinel, updated Sept. 2018, https://www.santacruzsentinel.com/2016/07/16/heart-and-mind-of-a-champion-olivia-weber-continues-to-seek-answers-for-mysterious-illness/

Link: Chris Smith Press Democrat update about Olivia on 1-29-2017: goo.gl/obciPU

*Link: "Pulmonary Thromboendarterectomy Surgery for Pulmonary Hypertension."

https://health.ucsd.edu/specialties/cardiovascular/programs/pulmonary-vascular-disease/pte/pages/default.aspx

*Hospitals where O receives care 2020 -2025:

Stanford Medical Center

NIH Undiagnosed Diseases Project

UCSF Medical Center

UCDavis Medical Center

UCSD Medical Center Jacobs & Sulpezio

Brigham & Women's (Harvard)

University of Mississippi

Tulane

*Hospitals where O was cared for in 2017-2022

-UCSF Medical Center

-UCSD Medical Center Jacobs & Sulpezio

-Dominican Hospital Santa Cruz

-El Camino Hospital Mountain View

-Cedars Sinai Medical Center, Los Angeles

*Hospitals where O was studied in 2015/2016:

-Johns Hopkins, Baltimore, MD

-Mayo Clinic, Rochester, Minnesota

- NIH (National Institutes of Health) Undiagnosed Diseases Program, Bethesda, MD

-Yale Smilow Medical Center, New Haven, CT

*Home hospital:

- UCSF Med Ctr. -- San Francisco

- Stanford Hospital -- Palo Alto

** Gratefully, we very much acknowledge Suzanne Ware, MD, and O's full army of dedicated PAMF doctors in Santa Cruz, CA, who work tirelessly on her behalf despite all of the chaos this situation brings.

We are also very thankful to journalist Chris Smith: our favorite Pulitzer Prize recipient and faithful journalist who has written about O many times. We thank everyone on Facebook and GoFundMe -- friends we've long known, and have never known, who have generously donated to Olivia's campaign to make her medical care (and life) happen.

We are forever deeply grateful and indebted to you all.

Thank you for everything you have done for Olivia.

Helen

Enter your donation forllness, Rare subtype Behcet's Disease. Olivia's Medical Fund