Hi everyone! My name is Wade, and I’m starting this GoFundMe for my wife, Grace. On June 2, she’s scheduled for major spinal cord surgery to release a tethered cord — a condition caused by her genetic disorder, hypermobile Ehlers-Danlos syndrome (hEDS ).

Because the connective tissues in her body are overly lax and fragile, the spinal cord can become abnormally anchored. Tethered cord occurs when the spinal cord is abnormally attached or “tethered” within the spine, limiting its movement and causing ongoing neurological damage. This was recently found after years and years of symptoms. While tethered cord often doesn’t show up clearly on imaging for hEDS patients, Grace’s MRI actually confirmed it — a rare and significant finding.

Grace has spent years battling multiple complex chronic illnesses, including lupus, gastroparesis, dysautonomia (POTS), hEDS, long qt syndrome, a blood disorder and more. Now, she faces structural spinal conditions on top of it all due to her body’s instability. She may need surgery for craniocervical instability in the future, if this surgery and PT do not provide enough stability and relief. This tethered release surgery isn’t a cure for all, but it’s a necessary step to prevent further decline and provide at least some relief of her many ongoing symptoms.

This surgery will require about 3 weeks in Charleston for pre-op, admission, and any outpatient checks and care. We’re incredibly grateful that Grace is under the care of Dr. Patel in Charleston — one of the top neurosurgeons for Ehlers-Danlos patients — but being over two hours from home makes the logistics and costs of recovery even more overwhelming.

What your support will help cover:

Any remaining funds will go toward existing medical debt from years of specialist care and chronic illness management.

Grace is incredibly strong — the weight she carries every day isn’t visible to most, but it’s real. She lives with pain and symptoms that would bring most people to their knees. The financial requirements of Grace’s conditions has already impacted us greatly, and preparing for several weeks away from home for surgery and recovery has only added more strain. If you’re able to donate, thank you from the bottom of our hearts. If you are unable, we’d be so grateful if you’d share this campaign and keep Grace and our family in your prayers.

God never promised the path would be easy — but He gave us people to walk it with. Thank you for being part of our village.

– Wade