Shea's Medical Expenses

I’m creating this fundraiser on behalf of a childhood friend, Shea-Marie, who, when I asked her if she’s set up a fundraiser with all of the incomprehensible, stressful medical expenses she has been going through lately, told me "no"; she feels too guilty asking others for financial help when she knows everyone is going through a difficult time right now. However, after Shea shared her story with me, I felt compelled to set up a fundraiser on her behalf. I have received permission to publicly share the details below, as she’s been open about her journey.

As many of her loved ones know, Shea has battled a life-threatening eating disorder from a very young age. She’s spent years fighting it and has survived medical crises and complications that even doctors couldn’t believe she pulled through. She’s worked so hard on her recovery from this challenging, insidious disease, but recently ended up hospitalized once again. However, this time, things have been quite different.

Shea was recently diagnosed with SMAS (Superior Mesenteric Arterial Syndrome), a very rare, but life-threatening digestive disease. (Feel free to research if you’re interested, as it’s complex and difficult to understand/explain). She does not have the cushion/fat padding that sits between the mesenteric artery and the duodenum, part of the small intestine. This cushion is necessary as it protects our organs, so right now, her artery is literally sitting on top of her intestine. This is causing excruciating pain, and due to the compression/blockage in her stomach makes it so that she cannot process food appropriately along with the extreme pain/nausea that comes with eating. Because of this, she had to undergo surgery to have a GJ feeding tube surgically inserted into her abdomen, so nutrition will bypass the blockage in her stomach and go directly into her intestines. The surgery was invasive, and the recovery has been much more intense than anticipated due to other medical conditions she is also dealing with.

This disease is so rare that Shea was hospitalized for almost two months straight, seeing countless different doctors and specialists, none of them having had any knowledge of the condition. She finally found a Gastroenterologist after weeks of being in the hospital who was familiarized with the disease. This brought her the hope that she needed. It’s terrifying having such a scary diagnosis that is so rare. Very few doctors have any idea how to even treat it, despite the fact the condition is fatal if proper diagnosis and treatment is missed and started in an appropriate and timely manner.

To try to make this long, difficult, and complex story of what Shea is facing as short and simple as possible, there are very few doctors in the country who treat this condition. She was finally discharged from the hospital and was residing with her father who flew out from Florida to Texas to be with her in May when he recognized how serious of a situation she was in. Her dad has spent thousands of dollars just to stay in a hotel and have a rental car in order to be with her at the hospital. Shea has a home healthcare nurse that visits her regularly, but she didn’t make it long after being discharged from the hospital before she was recently readmitted with a severe infection at her surgical tube site, causing her to become severely ill.

No matter how many details she’s willing to share, there’s no way anyone can understand the complexities and just how much she is going through. She tries to limit the amount of info she shares because she is so worried about worrying others. She emphasizes the importance of staying as positive as possible, keeping her faith stronger than her fear. Her motto is always, “God and Gratitude will get me through.”

The guilt and shame Shea feels about the massive amount of money her dad has spent in Texas so she isn't alone has been consuming her to the point of making her ill (as if she’s not already sick enough), and it’s definitely affecting her ability to focus on healing and recovery. This, along with the immense stress of not having one of the most basic/crucial needs on Maslow’s Hierarchy of needs met, secured shelter, is causing excess stress.

Shea has a few options for housing, one of which is provided through a non-profit specifically for patients and families residing near the hospital to receive treatment. But time is running out, as Shea and her dad can no longer afford to stay in the hotel while they wait. Securing housing like this is a process that takes time…time Shea doesn’t have without the funds to help support her. As of next week, they can no longer afford to stay in the hotel. Her dad will be leaving to return to Florida, as he’s already been in Texas some time, and she will be left to deal with a lot on her own. As much as she wishes she could go home to be with her family, she must stay put and continue working with the team she has, as many doctors believe she will not make it if she doesn’t. It took her this long to find a treatment team capable of helping her, so she doesn’t have the time to search for another team somewhere else. The professionals who deal with her diagnosis are so rare and difficult to find. She’s so grateful for some of the amazing doctors and treatment providers who are graciously treating her at a much lower cost. However, she still does not have the financial means to get by.

So many people have been supporting her in so many ways, and though she doesn’t want to ask, I know there are many people who love and care about Shea so much and would love nothing more than to help out however they can. She has come so far; it’s not her time to be forced to give up all she’s got going for her out there to give her the best possible chance at surviving and overcoming this. Any donation is truly appreciated. Even $5 will add up and help her continue this life-saving treatment.

Here’s a little info on what your donations would help with. Once she secures a place to live, Shea will have her car shipped from FL to TX. We all know the price of gas these days, and as many different doctors she has to see weekly, they are all far away from each other, so gas is going to be a big expense. Sometimes she will not be well enough to drive herself and will have to pay for transportation such as Uber or Lyft. Donations will also go towards helping with Shea's medical bills, which include: (and this isn’t even including her medical bills from her prolonged hospitalizations):

Shea’s fighting to get insurance to cover as much of this stuff as possible but there’s still always going to be co-pays that add up on top of necessary things that aren’t covered by insurance at all.

Once she gets her housing secured, she plans on applying for food stamps again, but until then (and even after approval, it will not be enough to cover the amount of money to meet her daily caloric needs via food). Yes, she is receiving a specific amount of calories through enteral nutrition (feeding tube), but it’s also imperative for both her eating disorder recovery as well as her physical health to continue to consume actual food by mouth when able to to prevent her GI system from paralyzing and shutting down completely.

More than anything, Shea wants to be able to pay her dad back for the amount of money he’s spent being in Texas with her for as long as he has. Though there’s no way she will be able to do that immediately, the more we can raise, the better she will feel about at least starting to pay him back in increments with whatever leftover money we can come up with. This isn’t something her dad is asking for, but it’s apparently very important to her in order to relieve some of the shame, guilt, and feeling of being such a burden. She’s sick and it’s not her fault, but she’s the kind of person who will prioritize paying people back and thanking them in any way she can. Anyone who knows Shea knows she’s one of the most grateful people you’ll ever meet. She emphasizes the importance of gratitude…focusing on gratitude as well as expressing gratitude.

Shea is more determined than ever to continue fighting every second of every day, as she has for years. Though these new diagnoses have been difficult for her to process, she admits it provides her a lot of relief and validation as to the physiological and medical explanations as to why she has never been able to maintain any sort of solid long-term recovery from her eating disorder, no matter how hard she has tried throughout the many, many years. These new diagnoses (there have been others on top of the SMAS, but that’s the main one she needs to focus on right now) give her hope that she will finally be able to receive the proper treatment and find full recovery from both her ED, SMAS, and the various other issues she’s been dealing with. She believes all of her challenges have a purpose and there’s a reason she’s made it this far. Her goal is to get better and pay it forward by using what she’s gone through to help others.

Thank you all so much for reading this and considering to donate any amount you are able to. If you aren’t able to donate at this time, please share this link, as that can be just as helpful.

Again, Shea didn’t want nor even give any thought or consideration to setting up a fundraiser, but she did permit me to share these details. If you know her or even took the time to read this summarized version of some of the things she’s facing, I think it’s obvious this is the right thing to do.

Thank you again.

***For those of you who have been asking if you could donate directly to her Venmo to avoid the fees GoFundMe apparently takes out of the donations, or for those who feel more comfortable doing it that way, Venmo is: 

@Shea-Steinmetz 

Last 4 digits of phone #: 7118