Help Rachel Steele Smiley Get Vital Spine Surgery

Hello everyone, my name is Westin, and I am Rachel's husband. For the past several years, Rachel has been struggling with significant, debilitating health problems that have continued to worsen, leaving us with little understanding of why her health has been declining and dwindling hope for her recovery.

All of this began back in 2014 when Rachel suffered what seemed to be a harmless fall at school. What has followed for the last 9 years has been a steady decline of her health and well-being with seemingly no explanation in sight. Rachel found that with every passing year her ability to succeed in school, engage in any kind of exercise, pursue hobbies like art, choral singing, and reading all diminished until they were impossible to continue. Watching a movie, walking around a store, or reading a few pages of a book would cause significant flu-like symptoms, pain, persistent faintness, memory problems, and loss of mobility. The options for how to spend her time grew narrower and narrower, and the symptoms became worse and worse. Her life was shrinking before our eyes. She visited doctors in specialties across the medical profession, but none of them could explain what was happening. These crashes continued and would leave her bedridden for hours or even days; they could be triggered by something as simple as trying to have a conversation, and eventually, basic activities such as showering or having the lights on. As this cycle of crashing and recovering continued, it became obvious that every subsequent crash was reducing her ability to engage in normal life, permanently. Rachel went from being a straight-A student with her sights set on medical school to being forced to drop out of college after her first year due to disability. She went from being an active member in her church and loving to volunteer in her community to being unable to leave her bed. She loves her friends and family, and this illness has stolen years she would have spent being a loving, engaged member in their lives. She misses them.

Over time, Rachel learned to manage these crashes better, and after we got married in the summer of 2019, we hoped we could get her illness under control and find more answers to help her achieve a higher standard of living. We found an amazing specialist from the Bateman Horne Center in Salt Lake City who finally shed some light on what medications and interventions could help. We finally had names for some of the pieces to this puzzle. She received diagnoses of Myalgic Encephalomyelitis, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. We began pinpointing as many specific problems that caused major crashes as we could, and tried to cut them out completely, or at least mitigate their negative effects on her health. With the help of many medications, reduction of activity, and transitioning to using a wheelchair, her health began to stabilize somewhat, but these illnesses were still leaving her significantly disabled.

Not long after things began to look consistent, new symptoms emerged, and her health resumed declining. Even with the medications and other interventions, it was clear that Rachel's trajectory was still, overall, downward. Despite our best efforts, it appeared we would never find a true solution and that the life Rachel had foreseen for herself ended her Senior Year of high school. At this point, we still had no idea that there was an underlying injury that was the culprit for her steep decline. We only knew that she was getting worse, and fast.

But then we found out about a couple of important cases that mirrored Rachel's experience extremely closely. One such case was that of Jen Brea, an incredible advocate in the disability community, particularly regarding Rachel's specific conditions. We found out that Jen suffered from instability in her spine, a physiological problem. Once corrected through a series of spinal surgeries in late 2018-early 2019, Jen's severest symptoms went into complete remission, and have not relapsed to this day. The new symptoms Rachel had developed pointed us even more strongly in the direction of cervical instability being the culprit, and the neck injury she sustained in 2014 lined up with the progression of her illness too well to be coincidence. Thus started the long and difficult process of securing a diagnosis of cervical instability, and showing that it was severe enough to warrant surgical intervention.

April 12th, 2022 is when, after 9 years of illness and 6 years of extreme disability, Rachel will be receiving life-changing surgery – the fusion of her C1-C2 vertebrae and additional work on her C3-C4 vertebrae, together fixing the instability that was so long suspected and finally proven this year. With your help to support all of the medical expenses that go into such a major surgery, Rachel may finally have the opportunity to live a life that she has never really gotten to know. Throughout this whole journey we have had to find satisfaction in the littlest of victories; any support you can give means the world to us.