Hi, my name is Sandy, and I'm a single, widowed mom to two teenage boys facing a major, life-saving surgery and I am humbly asking for your help. My story is a warning about what happens when invisible illnesses like Ehlers Danlos Syndrome goes unrecognized. Patients are dismissed, disbelieved, and left to deteriorate in isolation. We need massive EDS awareness so that others do not have to fight a decade alone just to prove they are dying.

Ten years ago, my body started collapsing. Doctors told me it was in my head.

I navigated endless specialist visits, insurance denials, and dismissive diagnoses while living with severe, debilitating neurological symptoms. I wasn't crazy—I was living with severe Craniocervical Instability, Chiari Malformation, and Ehlers-Danlos Syndrome. Because standard, lying-flat scans don't show the physical toll of gravity, the medical system failed to see what was happening to me for ten long years.

My neck can no longer hold the weight of my own head.

Simply put, the ligaments at the base of my skull have stretched and failed. When I stand or sit upright, gravity causes my skull to sag downward, literally crushing my brainstem and spinal cord. Every single day is a battle against severe neurological deficits, extreme pain, and a body that is rapidly losing basic function. The below picture is my x-ray from 2025.

I spent a decade fighting this system on my own. I have reached the end of my rope.

I am a small business (Hand-Em-Down Consignment) owner and a mom. I am not someone who sits back or asks for handouts—I have worked my butt off, tried to exhaust every resource, and tried to fix this on my own. But I have hit an impossible wall: to survive, I am facing a massive, high-risk spinal fusion running all the way from the base of my skull down to my lower neck (C0 to C7), plus part of my skull removed to stop dangerous brain swelling. Because this fusion locks my entire neck, I will permanently lose all ability to look up or down and 70% right to left. This is LIFE CHANGING surgery.

Fighting Two Battles at Once: Cancer and a Collapsing Spine

To make matters worse, while fighting relentlessly for my spinal diagnosis, I received another devastating blow: I was diagnosed with thyroid cancer. I already underwent surgery to have the left side of my thyroid removed in February. While cancer still remains in the right side of my thyroid, my failing spine has become an immediate, life-threatening crisis that must take precedence if I am going to survive.

Insurance won't cover the cost to save my life.

Not everyone has a safety net of family or friends to fall back on during a medical crisis. Because these complex surgeries require world-renowned specialists, they require a significant down payment just to get me on the surgical calendar. I have fought until I am physically and financially out of options. Admitting I need help is one of the hardest things I have done, but I cannot cross this finish line without a community behind me.

Here is a video of my actual surgeon teaching other neurosurgeons about my condition:

EVERY DOLLAR goes directly to my surgical costs AND recovery.

I almost forgot to mention the rest of my crew:

Here are my four sweet pets who are used to running the house right alongside me! They have been my loyal little sidekicks through all of this, and recovering safely means making sure I can keep taking care of my whole family—paws included.

Whether it’s a donation, a share, advice, money-saving tips, a home-cooked meal, or simply extending a hand in friendship, every bit of support means more to me than words can say. No one should have to navigate a broken system by themselves.

Thank you for seeing me, believing my fight, and standing with me.

It SHOULD NOT be this hard to get a medical answer.

I know I am not the only person experiencing this nightmare—fighting an uphill battle against a system where standard tests miss severe, dynamic conditions. It took specialized weight-bearing scans to finally reveal the truth. For anyone walking a similar path, I cannot recommend Target Radiology enough. Their specialized upright scans and detailed diagnostic reports were phenomenal, finally giving me the concrete proof I needed when everyone else overlooked it.