My name is Stephanie with help from Sierra. I’m posting this for my best friend who’s too sick to manage this herself, but she wrote every word you’re about to read. All I’m doing is making sure it’s seen. Please read it and share. Please keep my best friend alive!
MEDICAL EMERGENCY
Without life-saving brain and spinal surgery, I won’t survive.
Hi, my name is Jamie, but most of you might know me as account number #2312221352 or L-22553. You could simply call me X, but that name’s already taken.
My medical files have been destroyed, tangled in contamination tied to my dad’s legacy. See, I fought so hard for him to be remembered that I got erased in the process.
I thought by keeping him alive, it would celebrate his life, but the truth was darker—and with it, I got buried in a system: online, in background reports, in medical databases.
This was by design in the beginning—to silence me. But once data is confused, computers haven’t evolved to empathize.
Eventually, I was so enmeshed with my father that I couldn’t rent a house, get medication, or verify my identity at a bank.
See, my dad was a doctor. Now I’m in a fight for my life but can’t even be seen by one.
My father left no will. The ugly truth I’ve hid even from myself in my grief—he crashed his plane with drugs in his system. He filed bankruptcy multiple times and was a recovering addict. I tried hiding all of this to protect his legacy but…
Now? Yours truly is confused as him.
My background report says I’m a sole corporation operating as him!!
That corporation testified as an expert witness in hundreds of massive malpractice cases. How do I know? It was my responsibility to ethically dispose of the records after he passed. He truly made a lot of enemies—or should I say… me.
So here I am, folks. Twelve years later. No family. Dying.
I have several rare conditions that need surgery.
Every day, I face indescribable pain. My eyesight is going quickly, my hearing sounds like I’m in a wind tunnel underwater, and I wake up gasping through a straw because my vocal cords are paralyzed.
My brainstem is being completely compressed.
My spine is collapsing.
As an activist, I’ve fought for survivors of the troubled teen industry, for patients, for justice—
Now I’m fighting for my life.
I’ve done a lot for my dad, my loved ones, friends, and for kids through my activism.
I gave back.
And all I’m asking for is a chance—
A chance at living again.
A chance to be seen again. A chance to SEE.
I don’t want to die.
I used to sing.
Tour.
Write music.
I charted on the radio.
My voice was all I had.
Now, it’s disappearing with every breath.
I’ve been diagnosed with:
• Complex Chiari Malformation – part of my brain is squished into my spinal canal.
• Syringomyelia – a fluid-filled sac in my spine caused by the Chiari. My syrinx is at T7.
• Basilar Invagination Type 2 – my C2 vertebra is pushing into my brainstem. Fatal without surgery.
• Craniocervical Instability (CCI) / Atlantoaxial Instability (AAI) – my skull and upper vertebrae are unstable.
• Ehlers-Danlos Syndrome (EDS) – a connective tissue disorder that makes surgery risky. My ligaments are like chewing gum.
Only four surgeons in the world are qualified to operate: Dr. Pablo Bolognese, Dr. Fraser Henderson, and Dr. Sunil Patel in the U.S., and Dr. Gillette in Spain.
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WHAT I NEED
I need brainstem decompression and skull-to-spine fusion surgery to survive.
Every day I go without surgery, I risk sudden death, permanent paralysis, and the total loss of my vision and voice.
There is no alternative. No time left. No more room for error.
Two specialists said I needed decompression—one removing skull bone, the other removing part of my brain.
A third proposed a suboccipital craniotomy, cervical laminectomy, and fusion without decompressing the Chiari.
That disagreement alone should tell you how rare and complex this case is.
They also found FOUR vascular anomalies in the exact region where surgery would happen:
• An infundibulum
• Hypoplastic left A1 segment
• Posterior
• My right vertebral artery ends in the PICA (which feeds my cerebellum).
orrrr…
In plain English (for us who don’t speak doctor): I’m not getting enough blood to my brain—and with compression happening by those structures, things look bad.
I also have levoscoliosis pulling my spinal cord to the left. Everything above the curve is collapsing. My body is folding in on itself. I’m spiraling fast.
And they can’t operate for bilateral thoracic outlet syndrome until the brain and spine issues are addressed.
I have no brachial or radial pulse in my right arm, and it goes completely paralyzed.
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Where You Come In:
If you can’t donate, please share. That helps clear my name and keeps not only my story, but ME from disappearing.
AIMING FOR:
1. Private PPO insurance that U.S. surgeons—like Dr. Bolognese—accept. This would give me a real shot at care while I attempt disability, which takes time I don’t have. I’m going blind NOW!
2. PICL treatment (Prolotherapy IntraSpinal Cervical Ligament) – an advanced, non-surgical intervention that stabilizes the upper cervical spine by injecting regenerative solution into the ligaments around the C1/C2 joint. It’s not a cure, but it could buy me time and may reduce how invasive surgery needs to be.
3. Prolotherapy – regenerative injections that help strengthen loose ligaments and reduce pain.
4. Craniofacial alignment with Dr. Tregaskes in Richmond, Virginia – this must be done before surgery. Jaw/bite instability can worsen brainstem compression and spinal instability.
5. DMX scan and Fonar upright MRI – critical tools that standard imaging and Medicaid don’t cover. I’ve had all other necessary scans done.
6. An iPhone Max – I can’t see any other phone. This screen lets me read and communicate without hunching or straining my failing vision.
7. Surgery costs not covered by insurance.
8. A caregiver during recovery. I don’t have family. I will need someone to help me survive post-op.
9. Travel costs – for scans, procedures, and possibly relocating for surgery or evaluation.
If I Have to Leave This Country to Survive…
I may have to seek medical care outside the U.S.—because I can’t get it here.
Between the confusion with my father’s records, mislabeling, lack of insurance, and being bounced between systems, the U.S. may not be an option.
Dr. Gillette in Spain is one of the only surgeons in the world who can treat my full condition: Chiari, CCI, AAI, BI, EDS, and vascular anomalies.
If I need to pursue medical asylum, basic survival expenses while abroad would include—a roof over my head, a way to get to the hospital, and enough to stay alive in a country.
This is what it’s come to.
Here’s a real breakdown on cost:
Procedures:
1.) Suboccipital Craniotomy + Laminectomy + Cervical Fusion (C0–C1–C2 down cervical spine)
This is major, high-risk, multi-level surgery.
• High surgical skill needed = expensive.
• Surgeon’s fee alone might be $60,000–$120,000.
• Hospital stay + ICU fees = $30,000–$80,000 extra.
Most Chiari/CCI surgical patients stay:
• 3–5 days minimum (ICU + neuro floor) = $20,000–$50,000 just in hospital stay fees.
Hospital Fees (stay alone — not including surgery)
• ICU stay:
$7,000–$12,000 per day
• Standard neurosurgical floor stay:
$4,000–$6,000 per day
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2.) Standard Chiari Decompression Surgery (bone removal only)
• Typical posterior fossa decompression without fusion:
$75,000–$150,000
3.) Cerebellar Tonsillectomy (Chiari tonsil reduction)
• Rarely done alone anymore (usually part of decompression surgery).
• If performed by itself:
$50,000–$80,000 (hospital + surgeon + anesthesia)
4.) Home Care/Nurse
$6,000 per month for part-time skilled nursing but I need a full-time nurse
5.) Digital Motion X-ray (DMX) Scan (for CCI)
• DMX scan cost self-pay:
$1,000–$2,500 (depends on location, often uninsured or cash pay only).
6.) Upright FONAR MRI
• FONAR MRI (special upright MRI) cost:
$1,500–$3,500 self-pay
• Add $500–$800 if you need cervical flexion/extension views included. (I do)
Without insurance, I’m looking at 1/2 million dollars. Even if insurance covers things, I’m very much in need of A LOT OF HELP!!!!!
If you want to support another way:
• Buy my book (which I donated to kids): https://a.co/d/3d0HGJh
• Listen to my song I Can’t Do This On My Own on YouTube (CashApp link @raresparrow) Didn’t think that song would become prophecy.
• Check out The Outsider – a track I wrote for The Last Stop documentary.
If you’ve ever felt unseen, erased, or misnamed by the world—
then you know what to do.
Don’t let them write me out.
Not like this.
Share it. Speak it.
All the love and life I’ve got left,
Jamie
Updates (1)
Yesterday
by Stephanie Rodrigues, Organizer
Hey Everyone,
This chart shows just a fraction of what Jamie’s up against.
When the bones at the top of her spine slip and crush her brainstem, her body forgets how to breathe, stand, see, and basically survive.
This scan shows that her clivo-axial angle — the angle between her skull and spine is dangerously abnormal:
• 119° when she bends forward (normal is 150–165°)
• 128° even when sitting normally
• 142° when trying to lift her head
These abnormal angles prove Jamie’s brainstem is kinked, compressed, and stretched — putting her life at risk with literally every move she makes.
It’s why these surgeries need to happen now to save her life.
Also confirmed in this document clip:
Chiari Malformation, Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), Type 2 Basilar Invagination, and a Syrinx (a fluid cyst) in her spinal cord.
Sharing this so people can see —
this isn’t just her words.
It’s real.
It’s urgent.
It’s documented.
#RareButReal
Thank you for taking a look, for sharing, and for keeping her in your prayers.
We love her very much. ❤️
