Help Kim Stabilize Her Neck - Ehlers-Danlos Spine Surgery

Stabilize My Neck, Change My Life – Please Help Fund My Spinal Fusion!

Travel day update: We’re at the airport and soon to be en route to New York. My pre-op with the surgeon is this afternoon and my downpayment for surgery is due.

Thanks to your support, the fundraiser is at $3,910 total (that’s $2,910 in community gifts, excluding the $1,000 kickoffgift from my boyfriend). We’re now only $1,090 away from unlocking the full family match that’s been promised when we hit $4,000! I’m grateful for every donation and share—visibility helps as much as dollars.

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Hi, I’m Kim. I’m scheduled for craniocervical spine fusion to stabilize my neck and protect the area where my spine meets my brain. My cervical spine is unstable, and that shapes my day—how much pain I’m in, how long I can sit up, whether I can think clearly, and sometimes even whether I stay conscious. Every day, I rely on a hard neck brace to hold my head up because my neck isn’t strong enough. I can’t even lean my head on my boyfriend’s shoulder while we watch a movie without passing out; that position reduces blood flow to my brain.

Have you heard the saying “your head isn’t screwed on right”? In my case, that’s literally the fix—this fusion will secure my skull to the top two neck bones (C1–C2) with small screws so it stays stable. We're hopeful this will eliminate the long list of symptoms I deal with every day.

Immediate milestone: $12,500 to keep my surgery on track (surgical down payment + remaining expenses)

The visible goal may update as we hit milestones; my total need is $53,000.

A quick note on Ehlers-Danlos Syndrome (EDS)

I live with hypermobile Ehlers-Danlos Syndrome (hEDS), a connective-tissue disorder that makes ligaments too stretchy and joints unstable. In my case, the top of my spine is affected, which can irritate sensitive structures near the brainstem and impact blood flow. Recovery can be slower, so I’ll need specialized post-op physical therapy to protect the fusion and regain function.

What your help makes possible

• I keep my surgery on track instead of postponing.

• Safe travel with a caregiver and stay near the hospital for early recovery.

• Specialized post-op physical therapy so the fusion heals well.

Why this surgery

My upper cervical spine is unstable and puts pressure on critical structures that affect breathing, heart rate, balance, and cognition. Conservative care hasn’t been enough. Fusion will stabilize the area, reducing constant mechanical strain so I can work toward safer, more functional days.

There are very few surgeons in the U.S. who specialize in this procedure for EDS patients, and none are near where I live.

How your gift will help

• Surgical down payment for a specialized, out-of-network neurosurgeon

• Travel & lodging (2 weeks): up to $7,000

Includes flights, hotel, rental car, food, parking/tolls, and incidentals

• Specialized post-op physical therapy with an EDS specialist, not covered by insurance: up to $6,000

• Remaining medical costs (balance due to the neurosurgeon and other non-covered care)

My boyfriend has pledged a kickoff gift of $1,000.

A family member has offered to match every donation after that, up to $4,000 to help me reach my immediate goal. That means your $25 becomes $50 towards my travel expenses and the downpayment to my neurosurgeon!

What I’ve already done

I booked flights and a hotel on credit to secure care. With ongoing out-of-pocket medical costs related to EDS, I can’t absorb this on my own.

Updates & thanks

I’ll share brief updates as I’m able before and after surgery. If you can donate, thank you—even small donations make a real difference. If donating isn’t possible, a share genuinely helps too.