Her Dad Was a Doctor — Now Only We Can Help Save Her Life

MEDICAL EMERGENCY

Without life-saving brain surgery, Jamie likely won’t survive.

She has multiple rare, life-threatening conditions crushing her brainstem and spinal cord. Time is running out—and she needs our help!!

(Chiari crowding from years ago that’s gotten worse. Trying to upload images)

WHAT’S WRONG

Jamie has Complex Chiari Malformation—a condition where part of the brain herniates into the spinal canal. But her case is far more dangerous than typical Chiari. There are only 4 surgeons in the world (3 in the U.S. and 1 in Spain) to operate.

She’s facing:

• Syringomyelia – a fluid-filled cyst inside her spinal cord

• Basilar Invagination (Type 2) – her C2 vertebra is pushing into her brainstem

• Craniocervical & Atlantoaxial Instability (CCI/AAI) – instability between her skull and spine is crushing her brainstem

• Ehlers-Danlos Syndrome (EDS) – a genetic disorder that makes her tissues too loose to support her body

• Levoscoliosis – a collapsing leftward spinal curve

• Several Vascular Brain Anomalies – restricting blood flow to the brain

• Bilateral Thoracic Outlet Syndrome (TOS) – cutting off circulation to her arms; she has no pulse in her right arm and risks limb loss

Combined, she’s not getting enough blood to her brain or limbs.

WHAT THIS ACTUALLY MEANS

Even sitting could kill her. Most people’s necks have no wiggle room, but when Jamie looks down at her phone or turns her head, her vertebrae slide dangerously—three times more than they should.

Part of her brain is extending through the base of her skull and into her spinal canal. It’s not just herniating—it’s significantly crowded.

Imagine a jam-packed hallway. This is Jamie’s brain tissue.

Now imagine cerebrospinal fluid (CSF) trying to squeeze through. It can’t.

There’s no space. No room to flow. Just massive backup pressure.

That’s how Syringomyelia was formed- the pressure forced fluid back into her spinal cord, creating a dangerous cyst called a syrinx. Left untreated, it can cause paralysis and permanent nerve damage.

The Role of CFS: It cushions the brain, clears waste, and keeps the nervous system functioning. When it’s blocked, pressure builds in the brain and spine, leading to nerve damage, circulation loss, and failure of critical systems like breathing, digestion, and heart rate. It’s a trifecta. Several conditions are doubling down causing the same issues.

For Jamie, even the tiniest sound or light causes excruciating pain due to constant pressure. It’s not anxiety. It’s structural.

She also has Dysautonomia, including POTS, which causes her heart rate to spike and her blood pressure to crash just from standing up.

WHAT YOUR SUPPORT WILL HELP WITH

1. Private PPO insurance – to access one the 3 qualified neurosurgeons in the U.S capable of tackling all of her conditions

2. PICL treatment – regenerative spine injections to possibly help fusion go better

3. Prolotherapy – to strengthen ligaments

4. DMX + Upright MRI – vital diagnostics Medicaid won’t cover

5. Craniofacial alignment – essential pre-surgical care

6. iPhone Max – her only way to read or communicate as her vision declines

7. Post-surgical caregiver – Jamie has no family to care for her

8. Travel & housing – for urgent appointments or relocation

9. Potential medical asylum overseas – Dr. Gilete in Spain may be her last resort

WHY HAS IT COME TO TRAVELING ABROAD?

Jamie’s father, a physician, died in a plane crash while on a humanitarian mission. She handled everything afterward. But while she fought to preserve his legacy, hers was erased. She is being confused as her dad.

After his death, records meant for him began showing up under her name.

Her background report now shows his bankruptcies, his medical licenses, and his corporation—all tied to her.

One medical chart even reads “Delusions: believes she is a doctor”

(No psych eval. No context. Just harm.)

Jamie has a degree in psychology. She knows what delusion is. But when she tries to speak out to explain the mix-up, the label worsens.

Instead of preparing for life-saving surgery, she’s been forced to spend her days filing HIPAA complaints, writing to Congress, and begging for basic care.

She doesn’t even have a primary care doctor anymore.

WHO JAMIE WAS

• A former touring singer

• A former athlete who taught kids to ski, river guide and nature enthusiast

• An advocate and author who donated a book to at risk youth

• A survivor featured in The Last Stop documentary

• A voice for those the system has failed

She’s always fought for others. Now, she’s needs our help to fight for her.

HOW YOU CAN HELP

• Donate – anything helps!!

• Share this – so her story and name aren’t erased

• Support her work: – Buy her donated book https://a.co/d/hG2ijnl

• Watch her survivor anthems (The Outsider, I Can’t Do This On My Own) on YouTube or Spotify https://youtu.be/OC7sXoj--jQ?si=A-g3ZTGCtJJaMKRi

• Donate directly: $raresparrow (Cash App)

If you’ve ever felt unseen, misnamed, or erased—then you understand. Don’t let her disappear.

Please help us save her life Share it. Speak it. Her friends who ARE her family, her pups and her community NEED her live!! Thanks for reading ❤️

Love and Survivor Fight,

Stephanie Rodrigues

PS: Breakdown on Costs

Without insurance, Jamie is facing over $500,000 just to survive:

• Suboccipital Craniotomy + Laminectomy + Cervical Fusion (C0–C2):

– Surgeon’s fee: $60,000–$120,000

– Hospital + ICU stay: $30,000–$80,000

• Standard Chiari decompression: $75,000–$150,000

• Cerebellar tonsillectomy: $50,000–$80,000

• In-home nursing (full-time): $6,000/month

• DMX scan (motion x-ray): $1,000–$2,500

• Upright MRI (with flexion views): $2,000–$4,300

Even with insurance, most of this will not be covered.