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. Even something as simple as sharing the link or reading my story to raise awareness means a lot. 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.

Way back in 2014, I had a car accident that left me with chronic neck pain, mild tachycardia (treated with a beta blocker), and gut issues—early signs of autonomic dysfunction that went unrecognized at the time. I was still functional but had limitations and managed these symptoms. In early 2024, new issues began to appear: my heart rate and blood pressure became unpredictable, my memory grew foggy, I experienced dizziness and sensory problems, and much more. By October 2024, my life flipped almost overnight. I went from active and independent to suddenly bedridden with terrifying neurological symptoms. I was hospitalized for two weeks, underwent countless tests — even a procedure for a suspected CSF leak — and still 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 the body I once trusted. I 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 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.

DIAGNOSISES & TREATMENT OPTIONS:

Through all of this, I was eventually diagnosed with various syndromes and conditions including POTS and Craniocervical Instability (CCI) — a rarely medically recognized, often overlooked condition that affects the stability of the skull and upper spine. Stretched or damaged ligaments can allow too much movement, which can be as serious as it sounds — potentially irritating or damaging the brainstem, irritate nerves, and the vertebral arteries and veins that pass through this area. We believe CCI is the root cause of all 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): $2,845

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

Dr Centeno consult + PICL #1: $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 (Finally someone who takes insurance lol)

Physical Therapy: $650

Dr. Bolognese medical review: $1,000

PICL procedure #2: $13,080

Denver PICL trip #2: $307, $900 points

Medical band and app: $283

TOTAL SO FAR: $48,760

OTHER POSSIBLE EXPENSES:

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