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Urgent Support Needed for Stacy's Medical Emergency

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The public recognizes as my artist name, Project Butterfly.https://linktr.ee/projectbutterflymusic

My life has been turned upside down. I am writing to you with a heavy heart, but also with a glimmer of hope that through your compassion, I may survive this tragedy. I hope that by sharing it inspires others to keep going and never give up. I have persevered in the face of unimaginable adversity. This is a summary of my five-year medical odyssey. I must provide a detailed explanation to ensure that you have a complete understanding of the situation, as it is complex. Due to the consolidation of business elements prior to my leave of absence, this launch has been delayed by two months. Please share this fundraiser.


2019 : Accidental finding of Bone Metastatic Cancer Stage 4b.

I resigned from performing live. Why? Diagnosed and subsequently underwent multiple surgeries to remove the cancer, including a hysterectomy, gallbladder removal, thyroidectomy, and orbital exenteration. I graduated college while enduring the highest dose of chemotherapy and multiple blood transfusions. Unfortunately, the cancer was not fully eradicated, and I was discharged with a terminal diagnosis and a survival rate of 12 to 48 months. I was unaware of the permanent side effects that chemotherapy can cause or the fact that cancer would become the very least of my problems.

2020-2022:

My dream was to secure funding and found a record label. I had been working toward this goal for several years, and it was finally coming to fruition. Just a few months before launch, at 2 pm I was feeling fine. I was asymptomatic, with no indication of any new health problems. By 5 p.m. that same day, my right femur had a baseball size knot and was very painful. There was no evidence of trauma that day. I initially went to an orthopedic emergency clinic. Tests were negative. Orthopedic referred to a spinal specialist. Battery of tests were performed, and diagnosed with degenerative disc disease and spinal stenosis. However, neither of these conditions at this time explained my leg pain. I was referred to new specialists. Rheumatologist discovered a genetic mutation ( AI298C ) puts me at high risk for deep vein thrombosis (DVT) and cardiovascular disease. DVT tests results were negative.Chronic fatigue diagnosed as permanent, residual side effects of chemotherapy. During this time, I signed my first record label. I began releasing music consistently every month. Oncologist/Hematologist ruled out blood cancer.Shockingly, other scans were negative for bone cancer or a mass in my femur. Subsequently, I began experiencing regular episodes of tachycardia. Cardiologist prescribed a beta blocker. All of my specialists tried various series of medications, but after chemotherapy, I am now allergic to almost all commercially available medications, including most antibiotics. This has led me to Vanderbilt infectious disease department, where I often have to obtain a specially developed antibiotic or be admitted to the hospital if time is of the essence. Adding to the nightmare, I began having problems with my right wrist. Neurologist diagnosed me with bilateral carpal tunnel syndrome, with the right requiring surgery. However, my leg pain is a more pressing issue that needs to be resolved, so the decision was made to postpone treatment.



2023-2024 :

February 2023, resigned from my position within the business end of industry due to medical affecting my ability. I signed with Universal Music Group. I was forced to reevaluate the label decision.Meanwhile, at this point in time consulted with a new pain management doctor, whom is also a top notch spine specialist. Transferred records and switched teams.The doctor ordered a battery of tests, including an MRI of my brain,my symptoms were consistent with onset of multiple sclerosis. Testing revealed no signs of multiple sclerosis or other abnormalities. Vascular referral was sent. ABI test results were negative. Multiple EMGs were negative. The new lumbar spine MRI revealed spondylosis, and MRIs of the cervical, thoracic, and lumbar spine revealed other issues, but none that were severe enough to affect my legs at that time. During this period, I began to experience pain in my right hand, arm, and neck. Previously, my first cervical MRI was performed in 2018. I had prior issues however, symptoms were not impacting my life. The cervical MRI reflected a multitude of issues.Motion testing results showed that flexion and extension are reduced by two-thirds. MRI also reflects straightening of the cervical.


















October 2023, right leg became swollen to three times its normal size, and difficult to place weight on it. The pain had spread to both legs and was incessant. I was desperate for a solution. I am driving around 1K miles a month to visit my medical team and spending two to three weeks away from home each month for appointments. Music production becomes mobile and I am completing my first album.




I had no idea what was wrong with me, and the doctors were unable to diagnose the issue. I completed a comprehensive psychological examination and passed with flying colors, indicating that the issue was clearly physical.














I have pneumonia and sinus infections that began every month, along with a host of other new symptoms. Why is this happening? A series of tests reveals ANCA-positive for vasculitis MPA https://my.clevelandclinic.org/health/diseases/13285-microscopic-polyangiitis-mp










Rare and incurable disease that is controllable by medications. The only available facility is Vanderbilt. Medicaid is not accepted. The doctors have tried to locate an indigent treatment program, but none exists within a reasonable distance. My primary care physician prescribed a topical cream for the skin symptoms and a steroid, but neither is effective for long-term use. At this point, I have lost all hope of a solution. My whole body is burning and the pain is worse at night, limiting my sleep to naps. I have also developed pain in my groin, which is often so excruciating that I am reduced to a fetal position. I went to the ER in Nashville and underwent a CT scan for an aneurysm, which was negative. I began having a complete blood count (CBC) performed every two weeks, as ordered by my doctor. Several months and each test reflect elevated white blood cell count and blood in my urine, but no signs of infection. The team of doctors concluded that this could be vasculitis affecting my kidneys, but my GFR is within the normal range. My symptoms progressed, and my left leg began mimicking the symptoms of my right leg. I also began having internal organ issues and my bladder a serious issue. I underwent a series of tests with a gastroenterologist and urologist, but all were negative. Concurrently, returned to the neurosurgeon because of cervical progression.



The left leg has begins to manifest the same symptoms. This day at the doctor, visually it looks like the worst. Looks can be very deceiving, it was far from the worst. The lumbar MRI findings only became apparent after several years, but the underlying damage had been present throughout.




I visited all my doctors. My oncologist informed me that I am in remission and will need a follow-up in three months. My cardiologist diagnosed me with cardiomyopathy secondary to cardiotoxicity, which was induced by chemotherapy. My neurologist diagnosed me with CIPN, a chemotherapy-induced neuropathy. I also have peripheral neuropathy and polyneuropathy secondary to peripheral neuropathy and bilateral carpal tunnel syndrome, with the right side requiring surgery. My rheumatologist diagnosed me with vasculitis and cancer-related fatigue. My pain management doctor prescribed a new increase of nerve script milligrams, in addition to all my other medical conditions. My neurosurgeon informed me that I have a multitude of cervical issues, including C5-6, which requires fusion. However, a new MRI is requested. My thoracic spine has bulging discs and other issues. My lumbar spine is diagnosed as the stack of conditions listed on the new report.The new lumbar MRI report contains terms added in parentheses beside most conditions that we can all understand. MRI : June 28. 2024

The order of the MRI report is as follows:














Anterolisthesis ( slippage of vertebrae) Type of spondylolisthesis Grade 1 ( 25% ) L4-5. L1-2 Trance retrolisthesis( posterior displacement of one vertebral body )Trance loss of intraverbal space height & Posterior disc bulge. L2-3-S1 Probable intervertebral hemangiomas ( benign tumors of abnormal blood vessels )L3-4 Trace loss of intervertebral space height & Posterior disc bulge. L4-5 Desiccated disc ( dehydration of disc between the vertebrae).Mild loss of intraverbal space height. Circumferential ( Entire disc circumference )disc bulge. Moderate to SEVERE Bilateral Arthrosis ( arthritis ) Complex ganglion cyst arising from the anterior aspect of the right facet joint. SEVERE impinging of the neuroforaminal segment of the nerve root. ( Nerve root is compressed ) Mild ligamentation flavum hypertrophy ( Abnormal thickening of ligamentation flavum ) SEVERE Neural Foraminal narrowing ( type of stenosis narrowing of the small openings between the vertebrae in the spine which nerve roots pass through.) Bilateral ( both sides) synovial cysts on the facet joints 9mm LEFT & 8mm RIGHT L5-S1. Desiccated disc. Posterior disc bulge w/ increased hyperintense signal annular fissure(Tear on the angular fibrosis thick outer layer of a disc )Mild bilateral facet arthrosis ( arthritis )



Immediately had a telephone consultation with my neurosurgeon to discuss the results of an MRI of my lumbar spine. The physician informed me that I am already exhibiting symptoms of progression to paralysis. I require in person consult. Private funding was graciously provided before launching this campaign. He also informed me that I am at risk of developing Cauda Equina Syndrome, which is a medical emergency.



July 2024 , forcefully I had to take a leave of absence from all work. I also filed for disability with the Disability Administration. Unsure if I will be able to return to stable work.


There is no cure for neuropathy only medications to control. Medications help control neuropathy, but they do not take away the constant burning sensation which is only one symptom.Peripheral neuropathy can affect nerves anywhere in your body. It can disrupt your body’s control of automatic processes, as well as your sense of touch and muscle control.






I have spinal stenosis and degenerative disc disease cervical, thoracic, and lumbar. Spinal stenosis is a condition in which the spinal canal narrows, putting pressure on the spinal cord and nerves. Most people who develop spinal stenosis symptoms are 50 or older. Spinal stenosis can be caused by a number of factors, including osteoarthritis, injury, spinal tumors, bone diseases, and past spine surgery.


Nontraumatic spinal cord injury (NT/SCI), which can occur secondary to spinal stenosis, has been shown to represent a significant proportion of individuals admitted for SCI rehabilitation.The narrowing can occur anywhere along the spine, but it is most common in the neck (cervical spine) and lower back (lumbar spine). Below are textbook images of spinal stenosis and degenerative disc disease.

Degenerative disc disease (DDD) is a chronic condition that occurs when the spinal discs break down, causing pain and stiffness. It can affect any part of the spine, including the neck, mid-back, or lower back. DDD can be caused by aging: As people age, the discs wear and tear, and the nutritional and blood supply to the discs decreases. Injuries: Daily activities and sports can contribute to DDD. If left untreated, can lead to debilitating pain, permanent damage, and other serious symptoms and conditions such as spinal osteoarthritis, herniated discs, spinal stenosis and potentially paralysis.














MRI reflects bilateral synovial facet joint cysts.

Ganglion cyst on the right side.Facet joints are the joints in the spine that connect the bones of the vertebrae and allow for bending, twisting, and stability.











During a spinal fusion procedure, surgeons place grafts to cause the vertebrae to grow into one another. The grafts can be made from the patient's own body, donor tissue, or artificial bone. The vertebrae are fixed together with rods, screws, plates, or cages. This procedure can be performed at any level in the spine and prevents any movement between the fused vertebrae. A fusion involves extensive bone work. Spinal fusions are typically the recommendation for extensive injuries that are not resolvable by any other treatments.


















In order to move, I absolutely must use over-the-counter "Voltaren" or generic brand combined with prescription medications. Spinal fusions are the last resort. Fusions considered one of the most major surgeries that exist. The recovery is painful and a lengthy recovery time. Full recovery is around one year with extensive rehabilitation and they do not guarantee a success or to not introduce other issues.




I have severe impingement of the nerve root at the L4-5 level.

Moderate to SEVERE Bilateral Arthrosis : L4-5

















Severe foraminal stenosis ( Neural Foraminal ) L4-5



















On June 26th, I obtained press photographs while struggling to come to terms with the upheaval in my life. I did my utmost to conceal my medical conditions. Thereafter, began transitioning into wheelchair lifestyle. In July, gratefully accepted into RAMPD with intentions of actively participating.




I have been denied Medicaid coverage and appealed the decision. I did not receive notification of the denial of my appeal until two weeks after the discontinuation of coverage, as I was away from home for medical reasons. I requested a fair hearing, but it was denied. My status remains unchanged. I was not allowed to provide Medicaid with information about my current medical conditions or treatment. While America is a wealthy country, it lacks universal healthcare and has the most expensive healthcare in the world. "


https://www.weforum.org/agenda/2023/02/charted-countries-most-expensive-healthcare-spending/


Coverage was ended. I received a separate letter after appeal that also denied for request for fair hearing. I really needed to explain in detail, preferably to a judge.








































I have contacted numerous government officials at the state and federal levels to seek a resolution to my situation. I believe that I still qualify for assistance, but unfortunately, I have not been successful. I refuse to give up. I recently discovered that there is a long-running lawsuit that is relevant to my situation, and the federal judge is siding with the plaintiffs.This was published on August 27, 2024.

https://www.reuters.com/legal/government/tennessee-wrongly-kicked-thousands-off-medicaid-judge-rules-2024-08-27/





















I was abruptly deprived of all medications, including my heart and thyroid medication. All of my physicians also advised me that abruptly discontinuing any of these medications would be extremely dangerous, especially in light of my underlying health conditions.



I received a quote from the marketplace. September 17th, my physician inquired about my progress of obtaining insurance. I showed her this fundraiser. She explained that insurance would be unattainable for the term that I would require it. I have underestimated the extent of damage and rehabilitation required. My physician kindly invested the time to look closely at this fundraiser. It has been revised to include only physician recommended to remain as stable as possible without insurance. Please see the update section for new detailed information.


$5,400 deductible. $655.58 per month. $18,667 total.



















I reside in a rural area where public transportation is not an option, which complicates matters further. Transportation must be scheduled one month in advance. I am deeply grateful that my physician is expediting the paperwork for my transportation to the pain management facility. I have secured permanent funding. Shuttle is first but, they informed me they may not have my needed times or days available. Flight is my only alternative.











September 2024, cervical symptoms progressed to include new symptoms, such as sensory issues and more pain. I'm now also experiencing new issues related to lumbar, the doctor states that this is known as " foot drop." I am in great physical distress, and the progression of my symptom are having a devastating effect on my life.I was advised to limit the use of my arm and hand, which is difficult as I am right-handed. He also stressed the importance of not continuing to lean forward as it is putting stress on my cervical. This is an issue as I can no longer sit straight upright to keep my posture correct. I'm having increased difficulty sitting at all, regardless of positioning.


The new cervical MRI report contains terms added in parentheses beside most conditions that we can all understand.

MRI : October 9. 2024

The order of the MRI report is as follows:


Uncovertebral arthrosis: ( type of arthritis that that

affects the uncovertebral joints in the neck )

C3-4 : Minimal to mild DDD ( degenerative disc disease) Small posterior disc protrusion.Mild canal stenosis. Patent Foramina (foraminal stenosis ) C4-5: Early mild DDD ( degenerative disc disease). Subtle narrowing (spinal stenosis ). Disc bulge. Borderline spinal canal ( stenosis narrowing and compressing the cord and nerves ) RIGHT side foraminal stenosis. C5-6: Mild to moderate left side DDD ( degenerative disc disease ).Disc/osteophyte complex ( bone spurs on vertebrae that compress spinal cord and nerve roots).Mild to moderate LEFT and mild RIGHT spinal canal lateral recess stenosis.Mild to moderate RIGHT foraminal stenosis. C6-7: Mild to moderate mostly LEFT side DDD( degenerative disc disease ).Disc/osteophyte complex ( bone spurs on vertebrae that compress spinal cord and nerve roots ) Mild to moderate LEFT and mild RIGHT spinal canal lateral recess stenosis. Mild LEFT foraminal stenosis.




























Multiple types of spinal stenosis and different grades all throughout my spinal column. As well as a multitude of other issues, including degenerative disc disease.


The higher the level of the cervical spine that has issues, the greater the impact. All of my spinal conditions are progressive.













October 21. 2024 : Neurosurgeon consult included both cervical and lumbar analysis. This included a comprehensive neurological exam. This determines the extent and severity. This helps to determine future recovery and rehabilitation needs. The testing grade is based on how much sensation can be felt at multiple points on the body and it tests motor function abilities. Also, additional testing called a Somatosensory Evoked Potential ( SSEP ) was conducted and paired with the previous EMG testing results.











The neurosurgeon stated upon delivering results that further look into the cervical MRI disk images are required. MRI written report does not have to explicitly state cord compression to indicate spinal cord injury. The office is looking at the disk images and combining with the neurological test result.Private funding before campaign launch has provided the follow-up appointment winter 2024.


October 23. 2024: All of the lumbar test results are back, and they are conclusive. This is subject to change due to not having health insurance and there are a multitude of other progressive spinal issues. Rehabilitation is required and surgery to stabilize the lumbar spine in an attempt to improve functionality and pain. I have had symptoms of the impinged nerve root for years, but it didn't show up on any tests until July 2024. The nerve damage is extensive, and it is very possible that it is permanent. We are networking charity care to accommodate the order from the neurosurgeon. Documented as a non-traumatic SCI. Incomplete paraplegia : L4-S1 ASIA/ISCoS : Grade C.


We concur that the absence of health insurance is detrimental and it is rare amongst patients.The winter 2024 follow-up will determine whether I am currently a quadriplegic or remain classified as a paraplegic. This distinction is important because it determines every aspect of my life. However, I understand that these conditions are progressive and without treatment, I will eventually be reclassified. The damages are very extensive and affect almost every vertebra. My thoracic spine also shows damage on the last MRI, but we have not yet begun to discuss or reanalyze those.

























The list below contains a comprehensive list of medical needs that are approved by my physician. I ask that you please contribute any amount that you can toward this list. You can remain anonymous. No donation is too small. I have no family to whom I can turn to for assistance. College loans were a gigantic expense and losing my access to healthcare was unforeseen !!!



The doctors will ultimately determine what we need to end the campaign. We will continue to keep the amount to the lowest possible. These would be documented in detail within the update section.


We are continuing to network with individuals to secure funding outside of our online campaign. If we are successful in securing funds, we will deduct the amount requested.






I am seeking your assistance in defraying the cost of my pain management treatment. I am in desperate need of a solution that will enable me to maintain multiple medications and active, consistent medical records.They also have found a way to provide new MRI's beginning in October. The annual cost of my treatment is $3,252. The provider offers a significant discount for patients with severe medical needs. The monthly cost, including prescription refills is $271. My appointments always fall near the third week of the month. This is an mandatory expense. It is the first goal amount to achieve monthly. I have included $3,252 annual cost. $185 appointment. $25 extra is random. Plus, prescription costs. If they do not random test that month, The $25 will utilized towards this campaign. Please see update section as all donations are listed as to where and when they are being applied.

























I have also included an Amazon Wish List of items that are vital. All items are Prime available and ship internationally. Items can be purchased with gift cards. Amazon also accepts promo codes that can be combined with payment. Items that are purchased ,the item amount will be subtracted off of the total fundraiser amount. I can also use cash donations to purchase possibly cheaper at a different online retailer. Fundraiser amount would be reduced accordingly. We will post updates with photos as items are received.

https://www.amazon.com/hz/wishlist/ls/7VO9D6MUDHH5?ref_=wl_share


























I have included an additional amount to cover the cost of my primary care physician. Regrettably, the health department will not refill my heart medication. However, they will perform routine laboratory work, including T4 level checks, to refill my thyroid medication. I have included additional prescription costs and am using a GoodRx discount card to reduce the out-of-pocket expenses. Refills are every 90 days on these. I have only requested the first three months. I have requested $200.



This is the bare minimum. In case of fatality the fundraiser will be revised and my durable will be requesting funeral expenses and notifying the public of arrangements.

















I am no longer able to manage all of my affairs, I have appointed a durable power of attorney.I have also included last will and testament and living will. This fundraiser is managed by myself and my durable power of attorney. Sherri Gray, whom is not added as a team member due to her legal role, has access to all accounts.

















September 7th, 2024, I am on emergency leave of absence. During this time, I will not be active on social media or music platforms. Throughout this period, I will refrain from participating in email communications and music industry business activities. I appreciate your support and understanding during this difficult time. I am deeply grateful for your assistance. We will keep you informed of my progress, including posting photographs when relevant.




Payment Methods :

We are accepting donations offline as well..If you have direct contact information for either of us, we would be happy to provide you with offline donation options. Please note that all donations, regardless of how they are made, are noted on this platform and count towards the campaign amount.




I am grateful for the financial assistance that I have received for my vision and dental costs. However everyone worldwide deserves access to medical, dental, and vision. No questions asked.









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Donations 

  • nathan vogel
    • $20
    • 6 d
  • Charles Beaton
    • $270 (Offline)
    • 13 d
  • Albert Ciavolino
    • $50
    • 15 d
  • Ann Kaushal
    • $75 (Offline)
    • 1 mo
  • Mahesh Patel
    • $25 (Offline)
    • 1 mo
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Organizer

Stacy Gordon
Organizer
Waverly, TN

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