Rare & Undiagnosed - Olivia's Medical Fund

Please read here for Olivia's story. We thank you.

March 2024

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

This is an ongoing campaign for a rare undiagnosed illness. We only come to GoFundMe when we really need help regarding something exceptional and urgent beyond our ability to handle.

We are mom & daughter alone without family, dealing with extraordinary expenses associated with Olivia's rare illness.

We thank you for reading her 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 Sciences major. Out of the blue one week after her 21st birthday, she had a critical, vast systemic emergency beginning with internal bleeding. Today, symptoms have compounded and this illness is still unidentified. It's been life-threatening by affecting her heart & lungs and also causing seizures. She also has a paralyzed stomach as a result, causing severe gastroparesis. She is unable to digest food. Olivia has therefore needed a central line (IV) 24/7 since this illness began out of the blue in 2011. Through the IV, she receives both nutrition and medicines.

We remain desperate to know what 'this illness' is so it can be treated. Over time without diagnosis, her symptoms have gradually worsened. We just never expected the medical world to not recognize it, but we've done a lot to find answers. Olivia is followed by the NIH (National Institutes of Health) Undiagnosed Diseases Project. We have also traveled to see researchers and specialists, and she has required many surgeries, one of them lifesaving. It is thought that O's symptoms are probably unrecognizable because they do not follow any recognizable order, and also because the core issues are very likely a rare variant of something not yet considered. So Olivia's extremely serious symptoms are collectively not yet understood. A few years ago, she went into heart failure and underwent a rare and complicated heart/lung surgery at UC San Diego. Blood clots were removed one by one from her heart & both lungs, the frightening result of ongoing internal bleeding and inflammation. She also has an odd situation of certain sphincters not dilating and contracting, for example her pupils. She also has seizures and vision issues. By writing about Olivia, we hope that you might respond to us regarding any recognizable symptoms. Thank you.

Because Olivia is basically still undiagnosed, I've shared her rare symptoms online, in newspapers and on the radio whenever possible.

It's just the two of us, mom & daughter.

We sometimes desperately need financial help covering travel to and from hospitals, vehicle maintenance, lodging, gas. Our good old car is outfitted so that Olivia can be transported laying down, but it's a 2004 Toyota that's often needing upkeep. 

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. A year ago we lost her brother Jason, my only son, who shared a lot of her symptoms. Thank you for reading our story.

Our best wishes,

Helen & Olivia

Trusty mirror-selfie/2022

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 by quietly laying beneath every hospital bed Olivia was ever in.

O with Mo - Stanford 2015

 »-(¯`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 her pelvic bone, consequently giving Olivia 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 risky being around hospitals so much.

That situation was the worst!

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

Below:

Sometimes, it's all too much. Olivia has been sick for so long that her friends have all moved on & she has, since age 21, been a silent observer of others' accomplishments like graduation, marriage, babies. She is however always optimistic and looking forward, but admittedly.. sometimes it's all just too much

Below: Christmas 2020 sepsis 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 needed 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.

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. This illness only takes. It never gives back.

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 large, 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 anywhere 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 - not this situation. But through this, we have learned that doctors are only human. We keep trying to find answers. But we never know 'why' certain symptoms happen, or what could be next.. because there's no label 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.

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. The incredible duo.

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

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

(Above - Photo: Yosemite, 2010, one year 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

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 columnist 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