What Doesn’t Kill You Makes You Poorer

This gofundme was organized by me Ryan Keene (Husband of Stacy Keene) her medical story was written by Morgan Wable-Keene our eldest "Kid"

What Doesn’t Kill You Makes You Poorer

Help a determined mother navigate severe chronic illness with lousy insurance.

What started for my mom as a baffling medical mystery quickly unraveled into a gruelling uphill battle against a cascade of debilitating conditions. Within months, she became housebound, unable to eat solid food, and living in fear of everyday things most people take for granted; thanks to unpredictable idiopathic anaphylaxis, exposure to fragrances, cleaning products, and even most foods can be life-threatening for her. She lost over 150 pounds in less than a year, struggled through terrifying neurological symptoms, and now navigates life like it’s a high-stakes game of “What is that smell, is it dangerous?”

Thankfully, after years of navigating this long and harrowing journey by trial and error alone, her care team finally reached a diagnosis. My mom hit the lottery with complex combination of rare and serious illnesses, including Mast Cell Activation Syndrome (MCAS), a disorder causing her immune system to overreact to countless triggers causing anaphylaxis; severe Multi-Systemic Dysautonomia, with debilitating symptoms like Postural Orthostatic Tachycardia Syndrome (POTS), gastroparesis and ectopic heart beats; Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome (EDS); ME/CFS (Myalgic Encephalomyelitis); and unfortunately, the list goes on.

These conditions have rendered her immunity fragile, her body frail, and her world alarmingly small. Her diet consists of all her digestive system can handle: next to nothing. All of her basic nutrition comes from limited ingredient filtered chicken broth made daily, pea protein, carrot juice, blueberry juice, and unflavored electrolyte solution - but her MCAS is so sensitive that even those still routinely trigger reactions. These range from merely annoying (hives) to occasionally dire - up to and including anaphylaxis. Despite having a feeding tube, her body rejects all standard formulas covered by insurance, forcing us to scrape together costly alternatives completely out of pocket.

Our health insurance, in its infinite wisdom, has steadfastly refused to cover essential supplies. Syringes (both enteral and standard), sponges, and drainage bags are all considered "unnecessary care" because she isn't able to use her tube for feeds, only administering the select few medicines that don't also - you guessed it - trigger anaphylaxis. The cruel twist is that there likely are tube feed formulas that she would be able to ingest without putting herself in danger… but they aren't covered, even though her doctors have deemed it medically necessary. If only her body would cooperate with their guidelines, right? All the while, her dental health has deteriorated because of the EDS, and sadly she will eventually have to have all her “luxury bones” (teeth) removed to limit risks of infection due to their failure. By now, you've likely caught on to the pattern - she cannot go the standard oral surgeon route without risking life-threatening complications (from anesthesia just as much as the now ever-present danger of leaving the house in the first place. She must instead be seen by a specialist… which won't be covered.

To add injury to insult? Throughout this entire ordeal, my mother has been unable to use even the most basic pain relief medications - even Tylenol instantly causes her symptoms to flare.

Why We Need Help:

Our family has stretched every resource to breaking point. My father’s income as an independent artist covers the basics, but we need help funding:

Out-of-network specialists for MCAS and related conditions

Specialized hypoallergenic feeding tube formulas

Essential compounded medications, as she reacts to most standard excipients and alternatives are not covered

Essential at-home medical equipment such as air purifiers, separate kitchen utensils to avoid cross-contamination, micron filters for her protein broth, and mobility aids

A more supportive chair for her to use without triggering further physical symptoms

Major dental work under specialized care

An enclosed respirator to help her avoid reacting to air fresheners, perfumes, hand sanitizers, cleaning supplies and countless other obstacles

A tablet to aid in communication and productivity during her periods of immobility

A watch that can monitor and alert us to heart rate irregularities and blood pressure fluctuations

A proper adjustable bed frame to help relieve the extreme pain caused by limited mobility

And lastly, the cost of living. We're on food stamps, and her liquid diet largely consists of fresh and organic ingredients. Anything else puts her at risk of exposure to pesticides, preservatives, and trace amounts of bacteria and fungi that are totally negligible to you and I, but critically dangerous for her.

During the past few years of medical trials and tribulations, a (very fluffy) silver lining has taken the spotlight:

Enter Tugboat, our ginger cat and unlikely hero. Tugboat has taken it upon himself to monitor her health—no training required. Against all odds (if you have an orange cat, you'll understand), he was able to learn her medicine schedule - and even more remarkably, we discovered that he can tell when she's having a reaction or suffering from a drop in blood pressure. Of course, he is not a trained professional - his method of "alerting" her to missed doses and oncoming symptoms is knocking things off her desk… followed by pawing at her syringes on the side table. We all pitch in somehow. Whatever happens, we'll continue tapping new sources of strength to navigate through this. We'll keep finding new ways to make life at home closer to normal. Through all of this, my mom has somehow managed to keep her humor, creativity, and determination intact. She might be stuck at home, but her spirit refuses to sit still. She’s still the first to crack a joke (even if it’s at her own expense) and is able to find joy. I plan on doing the same.

How You Can Help:

We’re asking for your support to give her a fighting chance at a better quality of life. Whether it’s funding critical treatments, equipment, or specialized care, every dollar counts. If you can’t donate, sharing her story will mean the world to us. Together, we can remind her she’s not alone in this battle.

From the bottom of all our hearts, both two and four legged, we thank you for being part of her journey toward healing.