Hi friends, family, and everyone who has offered support —
After months of deciding, Hans and I started a GoFundMe! To be upfront: Hans has a good, stable job, and we know we’re fortunate in many ways—which is part of why we waited to create this.
We don’t want anyone to feel pressured to give; we’re simply sharing this for anyone who has expressed interest in helping us. We’ll keep everything updated as treatments unfold so you know exactly how donations are being used.
WHAT HAPPENED?
For those who don’t know my story — hi, I’m Grace. I’m 33, and before all this, I was a globetrotting, adventure-chasing graphic designer, deep thinker, cozy café lover, and health food enthusiast.
In 2014, I was in a high-speed car accident that left me with daily chronic neck pain that often triggered migraines and muscle spasms, along with tachycardia (managed with a beta blocker), dizziness, tinnitus, sleep disturbances, fatigue, and gut issues—early signs of autonomic dysfunction that went unrecognized at the time, as I was repeatedly told it was just anxiety. While I remained functional for years, I lived with limitations and managed my symptoms through constant doctor visits, procedures, medications, and so many lifestyle and diet changes.
Over time, more issues slowly crept in, and by early 2024, my heart rate and blood pressure became unpredictable even with medication, my memory grew so foggy I questioned if I had dementia, the dizziness intensified, sensory issues developed, and much more. Then in October 2024, my life flipped almost overnight—I went from active and independent, managing my chronic symptoms, to suddenly bedridden with over 40+ terrifying neurological symptoms that fully debilitated me. I was hospitalized for two weeks, underwent countless tests — even a procedure for a suspected CSF leak but came home with no answers. I couldn’t sit up above 20 degrees, experienced terrifying neurological episodes that felt like my autonomic system was shutting down, and felt completely disconnected from my body.
I have spent months fully horizontal — stuck in bed day after day — where even noise, light, a sneeze, cough, or sitting up too long could trigger hours of neurological episodes. Now, 8 months later, I can only sit up for 3–5 hours a day max. I'm still so far from my normal self, but thankful for the little bit of upright time in comparison to the complete orthostatic intolerance I had at the start. I continue to hold on to hope for more progress, functionality, and independence as I continue to work hard during this recovery process.
DIAGNOSES & TREATMENT OPTIONS:
Through all of this, I was eventually diagnosed with various syndromes and conditions including POTS and Craniocervical Instability (CCI) — a rarely recognized and often overlooked condition that affects the stability of the skull and upper spine. When the supporting ligaments are stretched or damaged, it can allow excessive movement in this area, potentially irritating or compressing the brainstem, surrounding nerves, and the vertebral arteries and veins that pass through it. We believe CCI is the root cause of most, if not all, of the syndromes and conditions I’ve developed over time.
So far, the most promising treatment is a regenerative procedure called the PICL, only available in Denver and they do not take insurance. Each round costs around $14,000, and I may need 1–3 procedures ($14,000–$42,000 total). Travel, lodging, and meals are also required for each week-long trip. Curve correction, PT, nervous system retraining, ongoing NUCCA care and other therapies available also give me real hope that I can reclaim a fuller, more functional life. Most, if not all, of the treatments do not accept insurance—though we’re just starting the process of filing claims to see if any part might be covered.
TO BE TRANSPARENT—EXPENSES ALREADY PAID:
- Medical bills (ER visits, co-pays): $1,409
- Medications: $109
- Medical supplies (cervical pillows, compression gear, etc.): $1,358
- AZ naturopathic care: $2,924
- AZ NUCCA care (upper cervical care): $2,930
- Mayo Rochester Clinic trip (Lodging, gas, parking): $3,208
- Mayo Rochester NUCCA: $304
- Roof rack setup for Rochester trip: $952
- Nervous system retraining course: $350
- Caring Medical Florida cervical consult: $175
- Dr. Tilchen consult + 2 FSM treatments: $625
- Dr. Paldeep Atwal genetic consult + follow-up: $975
- DMX imaging for CCI: $1,150
- PICL #1 + Dr Centeno consult: $13,205
- Denver trip #1 (Lodging, gas, parking, & food): $2,682
- Denver NUCCA care (Trip #1): $490
- Dr. Colin Buchanan (Neurosurgeon, CCI 2nd opinion): $25
- Physical Therapy: $650
- Dr. Bolognese medical review: $1,000
- PICL #2 procedure: $13,080
- Denver PICL trip #2: $307, $900 points
- Medical band and app: $283
- Post concussion and brain rehab: $350
- PICL #3 deposit: $5,000
- Dr. Rosa upright MRI study, report, hotel etc: $7,813
TOTAL SO FAR: $69,008
OTHER POSSIBLE EXPENSES:
- Post-procedure physical therapy
- Central sensitization syndrome (CSS) / neuro rehab
- Potential cervical curve correction
- Dr. Hepworth review of venous compression: $600
- Armen labs blood work: $1,827
- Ongoing weekly NUCCA adjustments: $85/week
If you made it this far—thank you. We’re deeply grateful for any support, whether it’s financial, sharing this campaign, or simply learning about a condition I too hadn’t even heard of until this past year.
If we end up needing less treatment than my doctors expect and there’s a surplus, we’d love to pay it forward to someone else with CCI who is still in need of care.
With love,
Grace & Hans
