Undiagnosed, Rare Illness - Olivia's Medical Fund

Please read here for Olivia's story.

At age 21, she became critically ill after taking a routine prescription of Amoxicillan. She bled internally and ended up hospitalized with an aneurysm in her pulmonary artery and blood clots in both her heart and lungs. Her stomach also became paralyzed at this time. The blood clots were removed during a rare, lifesaving surgery at UC San Diego. Olivia has, ever since, needed a central line (IV) for both meds & nourishment.

She has never been fully diagnosed.

UCSF and Stanford feel this is most likely a rare auto-immune form of Lupus, Behcets, Anklosing Spondalitis or Hughes Stovin - all fall under Rheumatology. Specialists now feel that her symptoms are likely arriving over time and out of order, making this situation incredibly confusing.

Her doctors have meanwhile been doing everything possible to get her life back. Olivia has a fine team and a lot of support from top medical facilities. However, without a diagnosis, there can be no dedicated treatment plan. This complicates everything - from medical care to insurance claims, disability and more. It can be confusing for new doctors to treat emergencies without understanding what's wrong.

The reason for this campaign: we desperately need help with the many extra costs associated with necessary appointments and emergencies. Gas, food, overnights. Car upkeep. Please help us keep going. Right now she is having multiple tests and scans done, due to a telling brand-new symptom occurring within her sacroiliac joint. UCSF feels it is an important clue and that Olivia will be diagnosed soon, finally. Having a 'label' to account for all symptoms is 'how it works' in today's world. Medicine and health care are increasingly tough. My son became ill with an undiagnosed lymphoma in 1987 and since then - for over 30 years until he died last year - I was his champion as well, throughout his bone-marrow transplant and resulting heart failure.

Both of my only children became critical care patients.

New genetic testing for O will soon replace old. We anxiously await new answers. Meanwhile, we desperately need help just making ends meet due to Olivia's constant, huge, out of pocket medical expenses. Her life continues via IV. Thank you

Fall - 2024

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

This is an ongoing campaign for a difficult, rare, undiagnosed illness. We only come to GoFundMe when we need serious help.

We are mom & daughter, we are 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 that started with internal bleeding.

The illness is serious yet unidentified, although more symptoms have appeared. It has been life-threatening via damage to her heart & lungs, a rare bone tumor, seizures, swollen joints, severe gastroparesis and recurring anaphylaxis. She has debilitating joint pain, rashes, vision issues. She is unable to either digest food or keep it down. This is called "Gastroparesis", which is becoming better known due to the drug Ozempic being in the news recently. Few have understood either its meaning or critical impact, but Olivia has required a central line (IV) since this illness started in 2011. Through the IV, she receives both nutrition and medicines.

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

We only come to GoFundMe when we need urgent help.

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

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 for reading Olivia's story.

Our best wishes,

Helen & Olivia

Trusty mirror-selfie/2022

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. We miss her so much.

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 O's pelvic joint, consequently giving her 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 tended by UCSF.

She just really really really wants to have her life back. We are constantly seeking answers. We are thankful for Ai as a new resource, and so 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

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.

After this surgery happened, a very rare bone tumor was removed from her 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 2024 and we still do not know why she is so ill. And 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!!

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 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 -2024:

Stanford Medical Center

NIH Undiagnosed Diseases Project

UCSF Medical Center

UCDavis Medical Center

Brigham & Women's (Harvard)

University of Mississippi

Tulane

*Hospitals where O was cared for in 2017-2022

-UCSF Medical Center

-UCSD Medical Center

-Dominican Hospital Santa Cruz

-El Camino Hospital Mountain View

*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 Hospital, New Haven, CT

*Home hospital:

- UCSF Med Ctr. -- San Francisco 

- Stanford -- 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 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're also grateful to everyone on Facebook and GoFundMe -- friends we've long known, and have never known. All 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. Without you, O would never have made it this far.

Thank you for everything you are doing, and everything you have done for Olivia.

Helen