Grace’s Medical Journey: Support & Hope

Story

Hi friends, family, and everyone who has offered support —

After months of going back and forth, Hans and I have decided to start this GoFundMe. This is truly for those who’ve already asked how they can support—we do not want anyone to feel pressured to give! The love we’ve received through visits, prayers, and time from friends and family has meant the world to us. We truly do not know what we would do without family flying in and out to help so that Hans can go to work.

We also want to be upfront: Hans has a good, stable job, and we recognize we’re in a more fortunate position than many—especially with so many people living paycheck to paycheck. That’s part of why we hesitated. But after eight months of ongoing medical care with no clear end in sight, we’ve decided to say yes to those who’ve reached out and offered to help and ease some of the financial burden ahead.

The listed goal amount is based on our expected upcoming bills—this is not a set fundraising goal and we in no way shape or form expect to reach it, just a way for those who want to help to have a clear breakdown of costs. If you prefer not to donate or are unable, sharing the link would still mean so much to us.

MY STORY:
For those who don’t know my story—hi, I’m Grace. I’m 33, and before all this, I was an adventure-chasing graphic designer, deep thinker, cozy café lover, and health food fanatic. In October 2024, my life flipped almost overnight. I went from active and independent to suddenly bedridden. I was hospitalized for two weeks, endured endless tests, and even a diagnostic procedure—and still, no answers. I couldn’t sit up beyond 20 degrees, experienced neurological episodes that felt like my entire autonomic system had shut down, and felt completely disconnected from the body I once trusted. It’s been a long, hard road. I spent months completely horizontal, stuck in bed day after day. These days, I can sit up for 4.5–6 hours a day—which is some real progress! Life is still far from normal, but I’m thankful for the small progress I’ve made and am hoping and looking forward to gaining more functionality and independence in my life in the coming months (not me over here hoping that by October—a year since all this began—I’ll be close to my old self and possibly able to enjoy the holidays this year / be a bit active).

Through all this, I was eventually diagnosed with Hyperadrenergic POTS and Craniocervical Instability (CCI)—a rare condition affecting the stability of my skull and upper spine. So far, the most promising treatment is a regenerative procedure called PICL, only available in Denver and not covered by insurance. Each round costs 14,000, and I may need 2–3 procedures (28,000–42,000 total). Travel, lodging, and meals are also required for each week-long trip. Curve correction, PT, nervous system retraining, and other therapies available also give me real hope that I can reclaim a fuller, more functional life. We still don’t know if this is the full picture.

EXPENSES:
To be transparent—here’s a list below of what we’ve paid so far, along with some possible upcoming expenses.

EXPENSES ALREADY PAID:
Mayo Rochester Clinic trip (Lodging, gas, parking): 3,208
Mayo Rochester NUCCA: 304
Roof rack setup for Rochester trip: 952
AZ NUCCA (weekly upper cervical care): 1,145
Dr. Centeno consult + deposit: 2,775
DMX imaging for CCI: 1,150
Medical bills (ER visits, co-pays): 1,092
Medications: 109
Caring Medical Florida cervical consult: 175
Medical supplies (cervical pillows, compression gear, etc.): 1,290
Nervous system retraining course: 350
Naturopathic care: 2,924
Total so far: 15,474

POSSIBLE UPCOMING EXPENSES:
PICL procedure in Denver (1–3 rounds typically needed but TBD what I will need, will be trial and error): 14,000–42,000
Denver trip lodging/travel costs for drive + week-long stay (Each procedure): 1,700–2,000
Dr. Bolognese review of cervical images: 1,000
Dr. Hepworth review of venous compression: 600
Dr. Paldeep Atwal review: 975
Armen labs blood work: 1,827
Genetic testing: 600
Ongoing nervous system retraining: 1,500+
Total upcoming: 54,502

TOTAL OF ALL CURRENTLY KNOWN BILLS: 69,976

EXPENSES NOT INCLUDED—TREATMENTS & OTHER OPINIONS WE MIGHT EXPLORE AS THIS CONTINUES ON:
Post-procedure rehab/physical therapy: TBD – waiting on guidance from Dr. Centeno and researching CCI/EDS-safe options
Potential cervical curve correction: TBD – dependent on Dr. Centeno’s evaluation and CCI/EDS-safe recommendations
Spero Clinic (neurological/brain retraining): 3,500 per week (average program lasts 4–14 weeks). NOTE: I will likely not go here, but I’m actively looking for a combination of physical and mental rehab support similar to this.
Ongoing weekly NUCCA adjustments: 85/week
Bloodwork for Dr. Paldeep Atwal: TBD cost
TOTAL OF ALL EXPENSES: TBD

We are so grateful for any support—whether it’s financial, sharing this campaign so it reaches more people, or simply keeping us in your thoughts and prayers! Thank you for helping us navigate this next step toward healing. Your support means the world to us.

With love,

Grace & Hans

Organizers :

Grace Steele is organizing this fundraiser.