*Olivia/Yosemite ~ a year before illness
Please note - link to Olivia's current fund is https://www.gofundme.com/OliviaWeber
To all of the many incredible people who made this trip happen for my daughter Olivia, THANK YOU.
100 percent of funds were raised by you to get her the urgent medical care she desperately needs.
Your generosity and kindness have changed our lives for the better, and we can never forget everything that you have done for O.
Unfortunately because of a new medical emergency, a new fund has been established because Olivia now needs a rare, lifesaving 'Open-heart/Open lung' surgery soon -- in Fall 2017. It is referred to as PTE, or Pulmonary Thromboendarterectomy.
The new fund is called: "Undiagnosed - Olivia Weber's Medical Fund".
This is the link: https://www.gofundme.com/OliviaWeber
This GFM account is still open, but I just wanted to separate the two because their purposes are different as things are again very serious.
Thank you again for everything you have done. Because of you, we live to pay it all forward.
(Link to this GFM page: https://www.gofundme.com/oliviafund1
April 11, 2016 - IMPORTANT:
This extremely precious GoFundMe account for Olivia's trip is nearly empty.
As a rule, GFM only shows the total amount of money 'raised' -- not the current balance in the account.
This campaign for 'O' started over a year ago, and is the sole source of funding for the trip. Because of her health, we've had to drive across the country to see specialists. She still has two more hospitals to reach yet, as she desperately seeks her diagnosis.
We hope and pray to continue this trip, and we gratefully thank you for visiting her GoFundMe page.
With our best wishes,
Helen (mom) and Olivia
Please help my 25 year-old daughter Olivia Weber reach the Mayo Clinic, the National Institute of Health's "Undiagnosed Diseases Program", Johns Hopkins Hospital and Yale School of Medicine. Her trip begins in Fall/2015 and will continue through early Summer/2016.
Olivia is critically ill with a baffling, rare disease that is extremely life-threatening and so far undiagnosed.
Because she is in extreme pain, Olivia generally lays down most of the time now in order to be comfortable - because of this, we are in need of a better vehicle for the trip, one that has room for a small bed as well as for her medical supplies (update: this fund has generously provided a terrific, used SUV).
A diagnosis is desperately needed so that her illness can be treated as soon as possible. Because O has an aneurism in a major artery near her heart, we can only drive across country from California in order to meet with specialists at each hospital; flying there is not an option at this time because of multiple blood clots in her lungs, plus the aneurism, all of which are susceptible to rupture from both air and altitude pressure.
We must also take the southernmost route, which has very little change in elevation.
Help from this site would fund a used-vehicle purchase for the trip, and it would also fund expenses like lodging, gas and food, as well as assist with her many extraordinary medical expenses.
*Please help - we are desperately trying to save Olivia's life.
*High school graduation photo
After a lifetime of playing competitive soccer and running track, Olivia is instead critically ill. We simply never saw this coming and it has changed our lives. We desperately seek the help of specific research hospitals across the country, because that happens to be where the specialists are located who are needed for her unusual case. With something so rare involved, we must find those working on the cutting edge of medicine.
Recently discovered through MRI and CT studies were the deadly aneurism in her pulmonary artery, and multiple blood clots in both lungs. She also has internal bleeding, known as 'vasculitis'. We think this causes the horrible pain she endures, and it possibly also caused the blood clots and the aneurism.
*After chemo with pal Momo - January 2015
This entire situation is extremely dangerous because at any time, the aneurism can rupture and end Olivia's life instantly. The blood clots are also a huge danger. Blood clots are usually treated with bloodthinning meds; however, because of the aneurism which could rupture, she cannot receive them until the aneurism is either ruled out or dealt with, somehow. She is aware of this now and admittedly, it's hard to stay the fear. She has had many nightmares about it.
Her doctors at UCSF Medical Center where she is being treated are doing their best, but so far there isn't a diagnosis. And without that, there is no treatment. The reality is this: when aneurisms and embolisms (bloodclots) occur, they are usually signatures of a disease, but so far hers is unknown.
*March 2015 Chemo Infusion at UCSF
At college, she planned to focus on her undergraduate studies of botany and coastal geology, and then go into teaching during grad school. At age 18, she excitedly left home to begin school at the University of CA at Santa Cruz (UCSC). Sadly, her first symptom of internal bleeding occured during her very first week. After 18 months of additional debilitating symptoms coming on, she was forced to take a medical leave. Now age 25, her stomach is paralyzed and she is very sick. Bed-bound most of the time now, she has a central line into her heart for meds and nourishment, and her nurses visit daily.
*March 30, 2015 Urgent Care nurses overseeing emergency care
She’s on an unending, weekly regimen of chemotherapy because the doctors so far think the blood clots and aneurism are inoperable.
In addition to the illness, this ongoing chemo cycle keeps her feeling quite ill. UCSF, the medical center in San Francisco where she is being treated, is aggressively trying to shrink both the clots and aneurism with chemotherapy. But at the end of the day, it is still very hard to have a treatment plan without a diagnosis. We must discover exactly what this illness is, in order to save her life.
*Christmas 2014 ~ celebrated 2 weeks late due to illness
To take Olivia on this trip requires funds I simply no longer have.
I love and care for my precious, beautiful daughter around the clock. Any hope of me holding a 'normal' outside job again has become impossible. She cannot be left alone and we have no family at all to lean on or go to.
We very much need help with funding this trip across country to the Mayo Clinic, the National Institutes of Health in Bethesda, Yale School of Medicine and Johns Hopkins in Baltimore. Because there will be multiple appointments and quite a bit of time spent at each of these hospitals, this trip will easily extend out 4-8 months, or longer. But it is being very carefully planned - and it is our only hope.
With this journey ahead, we have hope.
*Better days with best friend Momo
The financial picture -
For our expenses, I have put 85k down as the GFM goal. After GFM fees are removed (not reflected in the above total), we are faced with many expenses for this journey, in addition to ongoing and extraordinary medical bills not covered by Olivia's medical insurance. We must have important medical supplies and medicines shipped overnight weekly from California during the entire trip. Lodging will be the biggest expense, as well as gas & food.
We desperately need help building this fund to its goal.
It's not easy making a trip like this happen, but it is a sincere lifesaving effort that we pray and hope for -- for O.
* With pal Mo in Cody, WY, one month prior to the illness hitting - it became complete over a two-week period
From our hearts to yours, we thank you very much for any help possible.
Thank you also for reading Olivia's story. Please kindly feel free to write to me if her symptoms sound familiar, or if you have any thoughts at all to share with us.
Helen (mom) and Olivia Weber
Please see newspaper articles about Olivia, written by reporter Kara Guzman at the Santa Cruz Sentinel in Santa Cruz, CA where O lives now: tinyurl.com/weber15
And also by reporter/columnist Chris Smith at the Santa Rosa Press Democrat in Sonoma County where O grew up: http://tinyurl.com/o63ezaj
Above all, we extend our thanks to everyone for the generous help that we've so gratefully received, as well as for the many kind messages, emails, prayers and comments on Olivia's behalf.