Send Sabrina Sasser to the Porphyria Shadow Ride!

For: Sabrina Sasser
Round Hill
Organizer: Lindsay Coursen, Elizabeth Parker, Laura Thompson, Jenny Huisenga
$3,007
of $3,000 goal.
Raised by 66 donors
100% Complete
This fundraiser is closed. Thank you for your support!

The Story

Sabrina Sasser is a homeschooling mom, a wife, a musician, a social butterfly, a caretaker to whatever animal happens to be in residence at the moment, a creative spirit, hobbyist writer, and many more things. And she's tired. But it's not for reasons you think. Sabrina is fighting a rare disease, Acute Intermittent Porphyria.

Though AIP is a genetic disease and she's suffered from it her entire life, Sabrina was diagnosed less than six years ago, at the age of 28, when her oldest of two daughters was three. Since that diagnosis, her condition has worsened and life has become more difficult. She spends 6-9 hours a week in the hospital infusion center, getting the only known treatment for her type of porphyria: infusions of dextrose (sugar calories are known to help manage the enzymes involved,) and hemetin, a blood product. The hemetin has the side effects of fatigue and nausea, so she spends several days a week feeling crummy just from the treatment. On top of that, her attacks have become more frequent and more severe and drawn-out. Sabrina spends 6-10 days per month in the hospital, hooked up to narcotic pumps to control her unbearable pain and receiving multiple treatments to get her body working again.

Throughout this monthly cycle of chronic and acute pain and nausea, weakness, fatigue, vomiting (sometimes blood,) screwy hormones, neuropathies, head-to-toe nerve pain, crushing headaches, confusion, depression, anxiety and, well, let's face it, plain and simple fear, Sabrina tries to maintain the most positive attitude she can. She dedicates her time to providing her daughters with a play-filled, enriching homeschool experience, she dotes on her family and strives to feed them healthy, dynamic meals, she loves on her friends as often as she can, and she connects to other folks suffering from silent, invisible and chronic illness online and in person.
One thing making her life more difficult, however, is the lack of research and knowledge of her very rare disease. While she has a great team of doctors who are doing their best to help her have the best quality of life they can possibly provide to her, she's never had the benefit of actually being seen by an expert in the field of the porphyrias. Her doctors believe that this is the next step that needs to happen in her treatment and could potentially reduce her symptoms and frequency of hospitalizations. Unfortunately, very few doctors in the U.S. know anything of worth about AIP, and only two or three are considered experts.

Well, next month, Sabrina has a rare opportunity to consult with one of those experts, meet other people with porphyria, and help raise funds for the American Porphyria Foundation!

Out in Oklahoma lives a man (who happens to be a real-life cowboy!) who married the cowgirl of his dreams. She, too, suffers from porphyria. After recognizing how difficult it is for her to receive meaningful treatment and medical advice, he decided he needed to do something to help her, and all the other porphies living in the US. So he contacted the APF, and has established the first ever cross-country trail ride, called the Shadow Ride, to raise money and awareness for the porphyrias! And in April, as a kick-off event, he's throwing a fun, meaningful, informative Western experience for fellow porphie families. The morning after this Wild West Fair, the APF arranged for one of the U.S.'s top-notch porphyria experts to present the latest in research and treatment options to patients and their families, and entertain a Q-and-A session.

This opportunity to interact with porphyria patients, families, and medical professionals could be a life-altering experience for Sabrina and her family. Sabrina is so excited by the possibility of her husband and kids getting to meet other people who can relate to their challenges. How many eight- and four-year olds can navigate a hospital? And when was the last time you and your significant other enjoyed a date night in the ER? While Sabrina often focuses on what it would mean to her husband and children to meet people in their same position, those of us who are Sabrina's friends know how much it would mean to HER to consult a true expert in her disease and come up with potential solutions to finally address her debilitating symptoms and reduce her constant hospitalizations.

The total expenses for this trip are only an estimated $3,000; however, this is completely out of her family's reach. Sabrina is on Social Security Disability due to her disease, and her husband Eric was laid off five months ago. Obviously, significant medical bills are a constant in their lives. I hope that you will choose to be a part of this effort to finance this special trip for Sabrina, Eric, Adelaide, and Esther Pearl! Any amount is so very much appreciated. It's such a simple gift that will bring so much joy, knowledge, and support to a family who has gone, and will ALWAYS go, through so very much.

We look forward to sharing photos of the Sasser-Strom family on this special adventure to Oklahoma!

Fundraiser Updates

Posted on April 8, 2015

Posted on April 8, 2015

Hello dear friends.
The day of our long-anticipated trip finally looms just before us. And with the kindness and generosity of so many, enough was raised to make it all possible! 
It is with a very sad heart, though, that I tell you we won't be boarding that plane Friday morning.
Please let me explain why.
By now, I'm sure that most of you know that I have been in the hospital for almost a week. Last Thursday I very suddenly came down with fever and chills and body aches, quickly followed by porphyria symptoms. We knew that a trip to the hospital was obviously warranted. 
The next several days were spent by me fighting off what felt like the nastiest bug I've ever had in my entire life, while simultaneously battling the pain and neuropathy of a porphyria attack.  My fever peaked at 104.5, and generally hovered in the 103 realm. I was confused and delirious for three days, one second shaking and shivering uncontrollably, the next second sweating right through my clothing. Lots of testing was going on during the first few days to figure out the source of the infection, which was ultimately determined to be a systemic staph infection. The source was unknown, but for various reasons it became rather safe to assume that my port was to blame (which had, just days before the fever set in, clogged up anyway.) 
Antibiotics were added to my IV cocktail, and each day my temp came down a bit, until being gone altogether by Sunday evening. 
Well, coincidentally, since my port had clogged earlier in the week at my regular infusion, we had scheduled a port replacement for Friday. But now that I was dealing with infection and fever, putting in a new port wasn't an option. Rather, we opted for a temporary PICCline to allow me to comfortably and safely receive hemetin until the staph was all cleared and a new port could be implanted. 
My doctors also wanted to check on my heart to be on the safe side; the particular strain of staph we're dealing with has a habit of sticking to heart valves causing a nasty heart valve infection. So they ordered an electrocardiogram, which I had Sunday. 
Monday, I was finally feeling fever-free and loads better. I was also told that something showed up on the heart scan: a spot on one of my heart valves. 
Therefor, I needed to have a TEE, a scan of my heart done via a scope down my esophogus, under general anesthesia. I also needed all the plastic out of my body, meaning my port (which is clogged anyway) but al
so my PICC. I can get a PICC put back in 96 hours after having negative blood cultures. 
That's where I am now; the sit and wait phase. I had the TEE and port and PICC removal done yesterday, and glory glory hallelujah my heart is clean as a whistle! (Yep! You know... how you keep all the whistles in your house? It's like that. Spotless. Infection-free.) I'm free of central lines and am currently accessed with a normal IV. It's driving me crazy. And I've gotta grin and bear it for a long time. So, y'all. That's where I stand: stuck in the hospital, frozen in time until I'm kissed by Prince Negative Blood Culture! 
As it became apparent that the trip would not be a reality, I had my cry, we had to softly let the girls down, they cried... But then we all decided we couldn't let this be the end of things. Rather than a dead-end, we've chosen to view this as a detour! 
After thoughtfully considering how we should proceed, of course consulting the ladies who started the fundraiser, we came up with a game plan. While I wait for my discharge, a good use of my time will be to be in touch with the American Porphyria Foundation about seeing a porphyria specialist. There are two who are well-known in the US who see patients: one in TX and I believe one in Upstate NY. And apparently there a few others who have been trained by the existing experts in the country, thanks to an effort by the APF to train future generations of Porph experts. The folks at the APF can help find the specific practitioner who would be best matched with me, and who will enroll me in all applicable current studies. Our plan is that in lieu of the trip to OK, we will travel to an expert who will see me as a patient, and tie it in to whatever fun family activity we can based on where we are in the country. My dad and Eric are working on getting the airline to refund our full ticket prices. My doctors have offered to do anything they can to help with that as well (airlines usually oblige when folks cannot use their tickets because of medical events.) Then, all of the funds raised from the fundraiser will be set aside in a safe account, where it won't get mixed in to our regular funds and spent on cell phone bills and cat food and toilet paper and all the horribly mundane things our money gets spent on. (I swear if we could just stop using the bathroom, the money we'd save in water and toilet paper would be enough to send us to Europe every year!) 
If anyone has any questions or concerns about the altered plans, please feel free to email any of us. I vow to stay very much in touch with everyone via this site to make sure everyone knows exactly how the money's being put to use. Everything about this project will be transparent. This fundraiser was such a gift to our lives. And unfortunate circumstances may have prevented us from being able to take advantage of the particulars of the gift, but we aren't letting that stop us from accepting your gift entirely! We're just... Exchanging it for a different size! 
What are your thoughts? Suggestions? I welcome your input! Please, if you have any concerns or questions, let us know! 
For now, let me feel all those warm fuzzies and  thoughts and prayers some more, that my cultures test negative really soon so I can get home to my girls, and on with my life! 
I love you, dear friends! Thanks for sticking with us through the years, and for years to come! 

Posted on March 19, 2015

Posted on March 19, 2015

Sabrina wants everyone to know how grateful she, Eric, and the girls are to each and every one of the lovely souls who have contributed to this project. We can't believe that in three days, half of the funds have been raised already! This means that Sabrina can buy the plane tickets! Next step is booking their accommodations, so let's keep up the excellent effort. If you haven't shared the link yet with folks who may want to help out, please do so today, so those fund are available for making all of their accommodations (many of you know that booking flight, hotel and rental together as a bundle can be very cost-effective.) 
Read Sabrina's latest blog entry here: www.myswelldisease.wordpress.com, and follow her blog if you don't already. She told us that she's got some ideas brewing for something fun during National Porphyria Awareness Week, which she'll be sharing on her blog. 
We thank you all so very much for helping us send the Sasser-Strom family on this very important trip. It is certainly heartwarming to watch a community flood a family with such love and generosity. 
With Gratitude,
Lindsay, Elizabeth and Laura ??????

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