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!