Undiagnosed - Olivia Weber's Medical Fund

Updated May 2020

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Olivia Weber is a 29 year-old woman who became ill at age 21 with a life-threatening illness that today is still undiagnosed.  Before it happened, she was a young athlete busting fast through college at UC Santa Cruz as a Science major.  She was excitedly looking forward to next doing her graduate work in northern Wyoming.  However, she instead became ill after a backpacking trip to Yosemite and never recovered; all plans were lost.  

In a way, her initial symptoms were just like a few that Covid-19 causes: a huge systemic inflammatory response, blood clots, lung involvement, digestive & skin issues.  At one point early on, a specialist told us that he was pretty sure she had been exposed to a virus: in addition to suspecting her symptoms, he wondered how in the world a healthy young woman could come down with so many things all at once?  And now with SARS-CoV-2 decimating lives right and left, we finally understand more about viruses and the harm they can do.  It's sadly and eerily almost exactly what happened to Olivia.

Olivia has been very sick for 9 years. Two years ago she had a rare and complicated heart/lung surgery to remove blood clots one by one from her heart & both lungs, the result of frightening internal bleeding and inflammation.  Among other things, she has very poor ability regarding digesting food, unfortunately has gastroparesis 24/7 and is often hospitalized. Stanford Medical Center is working hard to find out how to help her; it has been a long road to get to this point.  All O wants is to get better and return to school.

 We are tethered to this life.  We cannot break away.  It is always difficult.  We so desperately need help for the extra expenses incurred, and those expenses always regard travel to and from hospitals.  Just a few months ago, she became very ill with spinal meningitis.  We are currently and unfortunately in very serious need of a vehicle, as the 2005 Durango we've had for the past 6 years just bit the dust. That car was so great because O could lay down comfortably.  Plus since she has a picc line, inside the vehicle it was all set up medically & for her IV meds.  I'm aware that so many people have so many needs, especially now, so it's hard to put this out here on GFM but we are just very seriously in need of a vehicle.  If anyone knows of any possible way to find a van, large SUV or other vehicle with seats that can lay flat in the back for a bed, and that can also be donated to us, we would sincerely and deeply, forever appreciate your help. 
Huge thanks,
 H & O



Above: March 2019
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Updated March 1st, 2019:

Olivia is now 28 and still undiagnosed.  After almost 8 years of seeking medical help amidst countless emergencies, surgeries & hospitalizations, we realize that this unknown illness is not to be easily outwitted by our humble efforts.  

Her story and a list of her symptoms are below.  In our ongoing quest to discover what this illness is and how to find treatment for it, all thoughts, ideas & suggestions are welcome.  Please contact us through this page or through our email address: [email redacted].  
Thank you.

Olivia is a patient at several fine medical centers including the NIH Undiagnosed Diseases Network in Bethesda, MD, and has undergone genetic studies that have so far revealed nothing.

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

Olivia Leigh Weber is a young, 28 year old woman from Sonoma County, CA who became very sick at age 21 with an undiagnosed illness.  

Before becoming ill, O was a devoted cyclist and lifelong, dedicated scholar - a 5'3" petite athlete who grew up playing left back on varsity, allstar & club soccer teams in Sonoma County, CA.  

During her 3rd year of college at the University of California at Santa Cruz (UCSC) in 2011, she suddenly became mysteriously ill.  It's possible but not proven that she was exposed to an unknown virus while backpacking with friends in Yosemite.  Her very first symptom was a confusing episode of dangerous internal bleeding & internal inflammation, the likely source of blood clots that were later discovered in her lungs.  The internal inflammation has continued ever since; she was recently hospitalized for much of summer & fall 2018 at UCSF.  

O receives chemotherapy once monthly to reduce the inflammation as much as possible; this is done to reduce further risk of clots (or 'pulmonary embolisms') occurring again in her lungs.  

In September 2017, Olivia had a rare lifesaving surgery called a 'Pulmonary Thromboendarterectomy' or PTE Surgery for short.  Both of her lungs as well as her heart were opened, and multiple embolisms were removed in a very long and difficult surgery at UC San Diego's Jacob's Medical Center.  How she developed these life-threatening blood clots at such a young age is a mystery.  As this rare surgery can only be performed once, it's imperative to keep them from happening again.

*This link describes the surgery: https://health.ucsd.edu/news/releases/Pages/2019-02-07-4000-lifesaving-heart-and-lung-surgery-at-uc-san-diego-health.aspx

In addition to painful internal inflammation, digestion became difficult immediately at illness onset and has remained so.  She has round-the-clock gastroparesis and severe nausea.  Because of this, O has a picc line in order to receive both meds & nourishment via IV.  
She also endures an odd, painful swelling of her facial bones every few weeks, as well as red or tea-colored urine that contains no blood.  Just before the swelling when a flare of symptoms occurs, she detects a scent that no one else can.  It happens every time, sort of like having an aura before migraine.
In addition, a rare fibrous bone tumor ('benign but growing') was discovered within her left pelvic bone.  An attempt to remove it in January 2018 at UCSF has not been successful, and she now faces radiation and a 2nd surgery.  
There are more symptoms.  If any of this sounds familiar, please kindly email us.

Olivia's medical care must continue.  Now that the pulmonary embolisms (blood clots) have been removed from her lungs and her heart is no longer enlarged, the focus is on getting her stomach to work again.

As O's mother & caregiver, I'm unable to return to work because it means she would be left alone.
She is seen at 2 UC Med Centers in CA that are 500 miles apart -- we greatly need help with the expenses associated with these frequent road trips (lodging, car upkeep, gas, food, overnight medical supplies, etc.).

We just desperately need funding for these on-the-road expenses to keep her medical care going.

Thank you for reading Olivia's story.  

Validations about her are below, or please google "Olivia Weber Santa Cruz" or "Olivia Weber Analy". 

Olivia is always upbeat and definitely ready to feel better.  She just wants to return to college, finish her degree and live her life.  Before the illness, she was a fast-track student and athlete majoring in Geology and Botany and planning her graduate work.   We never saw this coming.


Please watch this wonderful video of Olivia with her Golden Retriever Mo from 2018.  Thank you :-)




Below: ICU.  First walk 5 days after having  a Pulmonary Thromboendarterectomy - Sept. 2017

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


Olivia has had many surgeries

Olivia was always a healthy, devoted scholar & lifetime athlete. Despite becoming ill, she was able to make it to her 3rd year of college in 2013 when she was forced to take a medical leave. And until this illness suddenly began 'out of nowhere', she played soccer, backpacked with friends and rode her bike 25 miles a day.  
She just wants to return to school and resume her life.

She maintains a really strong 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 next image wearing jersey #16.  With The Patronas women's soccer team while at UCSanta Cruz, six months before the illness hit:


Olivia is always accompanied by her very precious, wonderful Golden Retriever pal "Mo" (below at UCSF). 


This situation for Olivia is serious & ongoing -- we thank you for any help possible.  
(Photo: one year before 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://en.wikipedia.org/wiki/Pulmonary_thromboendarterectomy

Hospitals where O has been cared for in 2020:
Stanford
Johns Hopkins
NIH Undiagnosed Diseases Project
UCSF Medical Center

Hospitals where O has been cared for in 2017/2018/2019
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
- UCSD Med Ctr. -- San Diego

** Gratefully we very much acknowledge Suzanne Ware, MD and O's full army of dedicated doctors in Santa Cruz, CA who work tirelessly on her behalf in spite of all the chaos this situation brings.  
We are also very thankful to reporter Chris Smith and everyone on both Facebook and GoFundMe -- friends we've long known and never known, all who have so generously donated to Olivia's campaign in order to make her medical care (and life) happen. 

We are deeply grateful and forever indebted to you all.

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