Hello everyone!
For those of you who don’t know, our mom has been diagnosed with Guillain-Barre Syndrome, or GBS. Guillain Barre is a rare disorder (fewer than 20,000 cases per year in US) of the immune system where the nerves are attacked by immune cells that cause weakness and tingling in arms and legs. As Guillain-Barre syndrome progresses, muscle weakness can eventually lead to full-body paralysis. GBS can last several years and in some cases, a lifetime.
The exact cause of Guillain-Barre Syndrome is unknown. In some cases, it has been found that a recent surgery or vaccination can trigger Guillain-Barre syndrome. The disorder can also appear days or weeks after a respiratory or digestive tract infection. There are no known cures for Guillain-Barre Syndrome but treatments can reduce the severity of the illness, giving our mom a shot at living a functional life with minimal pain and discomfort.
Plasmapheresis treatment (TPE), is a nonsurgical therapy that removes and replaces a patient’s blood plasma. TPE works by ridding plasma of certain antibodies that contribute to the immune system’s attack on the peripheral nerves. So far, our mom has undergone over 30 plasma exchange (plasmapheresis) treatments.
TPE involves long days at the hospital multiple days a week and as a result, our mom has had to miss several days and even months of work since her diagnosis. Her medical bills are currently at $25,000 and her co pays alone for just the transfusions are at $14,000 and counting. She must undergo transfusions every 6-8 weeks in hopes of reducing the severity of the disease.
Anyone who knows our mom knows that she is the first to click on a link and donate to others, even complete strangers. Much of her volunteer work has involved mission trips to Haiti to rebuild schools, disaster relief in NOLA post Hurrican Katrina, and volunteering in local homeless shelters. She has been a volunteer at her church for years and is always looking for ways to help serve others. Her empathy is unmatched and we can confidently say she is the most caring, kindhearted and generous person we have ever known.
It has been a long year trying to navigate the physical, mental and emotional challenges that have come from our mom’s diagnosis. . She has lived most days exhausted and in pain with not one complaint. She has stayed so positive and strong throughout this experience Not once has she asked for help. But as her daughters we feel compelled to make a positive impact on her journey in whatever way we can. We have no clue how successful this page will be. We are truly not even sure she will let us send it out! But chances are if you are seeing this, she has (reluctantly) allowed us to reach out to you all for help.
If you have read to the bottom of this page, we want to thank you for simply listening to our mom’s story. We are hoping that through spreading this page to friends and family, we are able to make a small dent in our mom’s medical debt so that she can carry on with treatments. With that said, if all you can afford to do today is read to the bottom of this page, we want to thank you. If all you can afford to do is send a simple message or email letting her know you are thinking of her during this time, we want to thank you.
More than anything, we are hopeful that through this page, our mom can see the impact she has had on the world around her. We want her to see the community she has built. We hope that from this, she is able to have tangible evidence of her support system. We want her to see the names of those who took the time out of their day to read her story because that is as impactful as any dollar amount. If all you can afford to give today is one dollar, please do so with your name and a note so that she can see you were here! We want you all to know that regardless of your donation, we appreciate you being here and we can’t thank you enough for your support, no matter how big or small 🙂
