<div>Hi everyone,
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<div>Many of you already know that I was recently diagnosed with <strong>Stiff Person Syndrome (SPS)</strong> — the same rare neurological autoimmune disease Celine Dion has. SPS affects only about 1 in 2 million people and causes severe muscle rigidity, neuropathy, and convulsions. Because it impacts my brain and spinal cord, I now have significant mobility issues and neuropathy that make daily life extremely difficult.
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<div>On top of this, doctors discovered an unexpected nerve sheath tumor inside my TMJ joint (where the jaw meets the skull). After a traumatic biopsy attempt — including 4 fine needle biopsies and 6 core biopsies — they still couldn’t get a proper sample. The entire tumor now needs to be surgically removed the second week of December, and the surgery is expected to take a minimum of 6 hours.
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<div>Even with insurance, I am required to pay my 80/20 copay upfront, which is $450, before they will even schedule or perform the procedure. This tumor affects my ability to chew, causes severe pain, migraines, and eye problems — and we still need an accurate biopsy to rule out cancer.
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<div>I’m also in urgent need of my power wheelchair, which has already been approved. Unfortunately, my portion is $1,200+ out-of-pocket before it can be delivered. Because of SPS and the convulsions it causes, a power chair is not optional — it’s essential for my safety and mobility.
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<div>Since losing my Medicaid (due to recent state system changes), I’ve been left with very high medical copays that I simply cannot afford on disability income. I am doing everything I can, but I’m stuck — I have no way to cover these costs on my own.
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<div>I’m humbly asking for help to cover:
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<div>• <strong>$450 copay for my upcoming tumor removal surgery</strong>
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<div>• <strong>$1,200+ copay for my power wheelchair</strong>
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<div>• Any additional medical expenses related to both
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<div>This surgery is important not only to relieve pain and restore function but also to ensure we can properly test the tumor to rule out anything more serious.
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<div><strong>Anything truly helps — even sharing this.</strong> I’m overwhelmed, in debt from medical expenses, and trying so hard to keep going despite all of this. Your support means the world to me.
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<div>Thank you so much for reading, supporting, and loving me through this.
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<div>I appreciate every one of you. ❤️
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<div>update 12/1/2025
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<div>Oh and now im having a laps in coverage so ive been crying all day over that too.
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<div>I found out i lost Medicaid because that “Big Beautiful Bill” actually broke the entire system and im one of the many ppl who had their files fucked up (got that info straight from Medicare and Medicaid case workers) apparently its hit many disabled ppl leaving them with no meds, no surgery, no oxygen, blind ppl left in filth- 
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<div>But now i guess it’s my turn to now lose the little i had health-wise to keep me going. 
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<div>Florida would rather kill us than fix their wrongs. 
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<div>If anyone knows a good lawyer , lmk
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<div>So now i officially have no coverage.
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<div>now I can’t get my medicine , including my IVIG, no more doctors or specialists. I don’t know what to do. 
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Support for Tumor Removal, ICU COPays, and Power Wheelchair

Support for Tumor Removal, ICU COPays, and Power Wheelchair

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