MEDICAL EMERGENCY

Our friend who’s like family to us, Jamie, needs life-saving brain and spine surgery immediately! She has multiple rare conditions crushing her brainstem and spinal cord. Time is running out. She’s already losing her eyesight, her hearing, and every night she goes to sleep could be her last.

Her lungs and vocal cords paralyze in her sleep for up to 2.5 minutes at a time. Some might confuse this with central sleep apnea, but it’s not. Jamie’s vocal cords and lungs paralyze from nerve compression, not airway blockage. Till now, she’s been lucky enough to wake up and move her neck for her pinched cranial nerves to release and allow the paralysis to stop. But for how long? She lives alone and cannot call out for help. She needs this surgery before it’s too late!

(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 doesn’t fit into the skull and is squished into her 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).

She’s also diagnosed with:

• Syringomyelia – a fluid-filled cyst inside her spinal cord which can cause paralysis at and below the location of the syrinx (cyst)

• Basilar Invagination (Type 2) – her C2 vertebra is pushing into her brainstem (more severe than Type 1). This can be fatal or cause paralysis. Type 2 is usually caused by a trauma but is associated with her other conditions.

>>[Jamie had a hook lowered onto her head from the belly of a helicopter by a former romantic partner. Her decline began significantly after this incident. Unfortunately, it was intentional and no, the man was never charged or prosecuted]

• Craniocervical & Atlantoaxial Instability (CCI/AAI) – instability between her skull and spine is crushing her brainstem. Responsible for vital body systems like breathing, heart rate. Every major system in her body is shutting down because her head basically isn’t attached like yours or mine.

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

• Levoscoliosis – a collapsing leftward spinal curve. Her spine is literally collapsing left as the weight of her head comes crumbling down

• Several Vascular Brain Anomalies – restricting blood flow to her brain and they happen to be in the region where surgery is supposed to take place

On top of the brain and spine issues, she’s got Bilateral Thoracic Outlet Syndrome (TOS) which they won’t operate on UNTIL this other stuff is addressed. The TOS is cutting off circulation to her arms. She doesn’t have any pulse in her right arm and risks losing a limb.

So to sum it up: she’s not getting enough blood to her brain or limbs.

Even sitting could kill her. You’re not supposed to have wiggle in your neck, but when Jamie looks down at her phone or even turns her head, her vertebrae slide — three times more than they should.

Part of her brain is extending through the base of her skull and into her neck area. You are supposed to have space here for cerebrospinal fluid. Not only is there no space — it’s crazy crowded. Think like a congested hallway or subway. That’s Jamie’s brain tissue.

Now imagine cerebrospinal fluid (CSF) trying to squeeze through. There’s no room! Just massive backup pressure.

When CSF is blocked (which keeps the nervous system functioning), 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 on the same parts of her body.

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 signed 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 and support #rarevoicerising

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

https://youtu.be/Iwt1E9CEGkA?si=ae7cYYwu5wxqmYGl

• 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 alive!! Thanks for reading ❤️

Love and Survivor Fight,

Julia Miller

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.