Support Sydney's Fight Against CCI and EDS
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Help Sydney get her life back by receiving surgery for Craniocervical Instability and Ehlers-Danlos Syndrome.
Why are we reaching out?
We’re reaching out through this GoFundMe with heavy hearts and hopeful spirits to ask for your support in helping Sydney, a brave and beautiful soul, get the life-altering surgery she desperately needs that is NOT fully covered by insurance, and the out-of-pocket costs are simply beyond what she or her family can manage alone.
The years of searching for a diagnosis, the countless failed treatments, and the toll of living with an undiagnosed genetic disorder have already placed a tremendous financial burden on her. This surgery—though critical—is being performed by a specialist who understands the unique complexities of her condition, and unfortunately, access to care comes at a BIG cost. Your support will go directly toward covering surgical expenses, post-operative recovery, and continued care. Sydney has dedicated her life to helping others—now she needs a community to help her back.
She has been diagnosed with Craniocervical Instability (CCI), a serious and painful condition that causes her skull to press down on her spine, and Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that affects her joints, skin, and internal organs.
Who is Sydney?
Before we talk about the surgery Sydney needs to regain control of her life, I want to first tell you about the kind of person she is.
Sydney is someone who has always poured her heart into helping others. After dedicating years of her life to her education, she earned a place in a highly competitive Physician Assistant program—a dream she had held onto tightly for as long as she could remember. For her, this wasn’t just a career choice—it was a calling. The loss of her father and sister profoundly changed Sydney’s perspective on life, health, and the importance of compassionate care. Their passing opened her eyes to the many flaws within the healthcare system and inspired her to pursue a path where she can make a difference for others facing medical challenges. From a young age, she made herself a promise: one day, she would be part of the change - to use her own experiences to bring empathy, understanding, and strength to patients who need it most. She would fight to make things better—for people like her family, and for people like herself. But tragically, she was failed by the very system she longed to improve.
Sydney has lived her entire life with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that went undiagnosed for years. In November 2023, her health began to spiral. What started as tension migraines, TMJ pain, neck pain, and back pain quickly progressed into a debilitating, chronic condition that stole away her energy, focus, and stability. Still, she pushed through. In May 2024, despite her worsening symptoms, she began P.A. school—carrying her dream forward even as her body was breaking down.
As her condition worsened, Sydney was rushed to the hospital week after week. The pain was no longer something she could manage, and yet she showed up, driven by her deep desire to care for others one day. It was that dream—her love for medicine and her passion for healing—that got her through her first semester.
Eventually, Sydney had to make an impossible choice. She took a medical leave from her studies so she could finally prioritize her own healing. She used that time to do what the healthcare system had failed to do: fight for answers. She went to hundreds of appointments. She endured dismissals, medical gaslighting, and systemic bias. She had to advocate for herself harder than anyone should have to—just to be heard, just to be taken seriously.
And finally, after all that, she received a diagnosis: EDS. Suddenly, all of her symptoms made sense—her pain, her fatigue, her chronic dysregulation. She had already been living with dysautonomia, specifically POTS (Postural Orthostatic Tachycardia Syndrome), and now it was clear that the instability in her neck—caused by the fragile ligaments from EDS—was exacerbating everything.
Sydney isn’t just a patient. She’s a future provider, a fighter, and a person who has never stopped believing in the good that medicine can do—even when it let her down. Now, she needs surgery to stabilize her neck and give her the chance to reclaim her life and return to the work she was always meant to do.
Treatments that Sydney has tried and FAILED
Sydney has undergone countless medical interventions in her fight to regain control over her health—many of which not only failed to bring lasting relief, but in some cases, worsened her symptoms. She is now at a critical point where surgery is no longer a consideration—it is her only remaining hope to restore stability to her neck and reclaim her life.
In her journey, Sydney has tried multiple rounds of Trigger Point Injections, a treatment designed to relieve muscle pain by targeting tight, knotted areas of muscle known as trigger points. These injections were meant to reduce the chronic spasms that accompanied her neck and back pain. Sadly, this intervention provided no lasting relief.
She also pursued several rounds of Botox injections—a treatment commonly associated with cosmetic procedures, but also medically used to relax tight muscles, reduce nerve pain, and improve range of motion in conditions like chronic neck and back pain. However, Sydney was given this treatment before receiving an accurate diagnosis, and instead of helping, it further weakened her already unstable neck muscles, significantly worsening her condition.
In an effort to identify the source of her pain, Sydney received Medial Branch Blocks, a diagnostic and sometimes therapeutic injection aimed at determining whether pain originates from the spine’s facet joints. While typically used to predict the effectiveness of radiofrequency ablation (RFA), this procedure failed as well—because Sydney’s pain is not caused by inflammation alone, but by a deeper, structural instability in the anatomy of her neck.
In addition, Sydney underwent Prolotherapy, an injection-based treatment intended to stimulate healing in damaged ligaments and joints by triggering an inflammatory response. This approach can be helpful for some, but in Sydney’s case, it could not repair the extensive ligament laxity caused by Ehlers-Danlos Syndrome, nor could it address the severity of her craniocervical instability.
In addition to these medical treatments, Sydney has tried:
* Physical therapy, including both traditional and specialized programs tailored for joint instability
* Chiropractic care
* Massage therapy
* Acupuncture
* Postural retraining techniques
* Neurological rehabilitation
* Bracing and mobility aids
* And mental health counseling to cope with the trauma, grief, and emotional toll of living with a misunderstood and debilitating illness
Despite her unwavering effort and resilience, nothing has stopped the progressive deterioration of her condition. The truth is: NO amount of physical therapy or pain management can correct the mechanical instability in her spine. Only surgical fusion can provide the structural support her neck needs to protect her spinal cord and allow her nervous system to function properly.
This is not just about pain—it’s about preserving Sydney’s ability to live, function, and return to the future she’s worked so hard to build. She’s not giving up. She’s fighting for her life—and this surgery is her chance to finally move forward.
The REALITY Sydney is living right now
Every day, Sydney endures symptoms that most of us can’t begin to imagine—debilitating head, neck, and back pain, constant dizziness, nerve damage, blackouts, vertigo, and the ever-present fear that one wrong move could change everything. Though she continues to fight with incredible strength and resilience, the reality is devastating: the life she once knew has been stripped away. Even the simplest moments—walking, sitting upright, laughing with friends—have become painful, exhausting challenges. This is not the lifestyle anyone should have to live.
But there is hope.
After countless appointments and misdiagnoses, Sydney was finally evaluated by a leading neurosurgeon who confirmed what she feared: she needs an urgent Craniocervical Fusion—a complex and specialized surgery to stabilize her neck and protect her brainstem. This procedure is her best and only chance to reclaim her health, safety, and independence.
Yet this hope comes with a heartbreaking price. The surgery is not fully covered by insurance and will cost $50,000 out of pocket—a cost far beyond what Sydney and her family can carry alone. Not only is this cost far beyond what her family can afford, but it also comes on top of the thousands of dollars Sydney has already spent on her medical journey—from out-of-pocket treatments to countless visits with specialists she had to seek out just to be properly diagnosed and heard.
Sydney’s healing journey is far from over. While her Cranio-cervical fusion marks a significant milestone, it’s only the beginning. Next, she’ll face a second surgery to address a congenital spinal condition known as Lumbosacral Transitional Vertebrae (LSTV)— an anatomical variation where the transverse process of the lowest lumbar vertebra (usually L5) partially fuses or forms a joint with the sacrum. This variation has caused Sydney to develop mechanical low back pain and nerve compression, something referred to as Bertolotti's Syndrome. It’s yet another complex challenge she must manage, layered on top of her ongoing neck and back pain. The upcoming resection surgery aims to remove the problematic segment and restore better spinal function—another critical step forward in her long road to lasting relief and recovery.
She’s now facing not only the physical toll of her condition but the emotional weight of knowing that the only thing standing between her and a livable future is money. And while she is profoundly grateful to have found a neurosurgeon capable of performing this life-saving operation, she’s also preparing to learn how to live again in a body forever changed by both illness and surgery.
That’s why we’re reaching out to you.
What is CCI?
Craniocervical instability (CCI) is a medical condition where the ligaments and structures connecting the skull (cranium) to the top of the spine (cervical spine, particularly the first two vertebrae: the atlas and axis) are too loose or unstable. This instability can lead to excessive movement between the skull and spine, which can irritate or compress the brainstem, spinal cord, or nerves.
Key Points:
* Location: Junction between skull and upper neck (especially C1 and C2 vertebrae)
* Cause: Often due to trauma, genetic conditions (like Ehlers-Danlos syndrome), arthritis, or connective tissue disorders
* Symptoms:
- Headache (especially at the base of the skull)
- Neck pain and stiffness
- Dizziness or vertigo
- Fatigue
- Difficulty swallowing
- Vision or hearing disturbances
- Brain fog or cognitive issues
- Tingling or numbness in limbs
* Diagnosis: MRI, CT scan, upright imaging, or flexion-extension X-rays
* Treatment: Can include physical therapy, neck braces, pain management, surgery
Diagnosis of CCI
Because CCI can mimic other conditions and standard imaging often misses it, diagnosis usually requires specialized testing:
1. Clinical Evaluation
- Detailed symptom history (especially positional symptoms that worsen when upright or with head movement)
- Physical exam to assess neurological function and joint laxity
2. Imaging Tests
- Upright MRI: Captures the brain and neck while you're sitting or standing—useful since symptoms often worsen when upright
- Dynamic Imaging (Flexion/Extension X-rays or CT): Shows instability during movement
- CT scan: Can reveal bone alignment issues
- Rotational CT scan: Shows how the head and spine move during rotation
Treatment of CCI
Treatment depends on the cause and severity of the instability:
1. Conservative (Non-surgical) Treatments
- Cervical Collar or Neck Brace: Limits movement and reduces stress on ligaments
- Physical Therapy: Strengthens neck muscles to stabilize the joint (carefully tailored to avoid worsening symptoms)
- Medication: For pain, inflammation, and nerve symptoms (e.g., NSAIDs, muscle relaxants, neuropathic pain meds)
- Prolotherapy or PRP (Platelet-Rich Plasma) Injections: May help strengthen ligaments
- Lifestyle Adjustments: Postural corrections, avoiding activities that strain the neck
2. Surgical Treatments (for severe or worsening cases)
- Craniocervical Fusion: Fuses the skull to the upper cervical spine using rods, screws, and bone grafts—eliminates motion to stabilize the area
- Decompression Surgery: If nerves or brainstem are compressed, tissue or bone may be removed to relieve pressure
How EDS causes CCI
EDS is a connective tissue disorder that makes collagen (a key structural protein) weak or stretchy. Because collagen supports ligaments, tendons, and joints, people with EDS often have:
- * Loose joints (hypermobility)
- * Weak ligaments
- * Poor structural stability
This affects the craniocervical junction (where the skull meets the top of the spine), leading to:
- Lax ligaments between the skull, C1, and C2 vertebrae
- Excessive movement at this junction
- Compression or irritation of the brainstem, spinal cord, or nearby nerves
Cycle of EDS and CCI Symptoms
- Loose ligaments from EDS → instability (CCI) → neck/head movement becomes harmful
- Movement causes neurological symptoms like:
- Brain fog, dizziness, fatigue
- Headache, vision issues
- POTS-like symptoms (from brainstem compression)
Cranio-cervical Fusion and EDS
A craniocervical fusion is a surgical procedure that permanently connects the skull (cranium) to the upper cervical spine, C1 and C2 vertebrae, using rods, screws, and bone grafts. It's done to stabilize the area and prevent excessive or dangerous movement, especially when the ligaments or joints are too weak or unstable—like in craniocervical instability (CCI)
Risks and Considerations
- Reduced range of motion in the neck (especially turning)
- Potential nerve or brainstem injury (rare)
- Need for very careful surgical planning—especially in patients with EDS or other connective tissue disorders
- It may require lifelong activity modifications
Sydney’s Medical History that was ALWAYS related to her diagnosis
Some of the truths that have recently come to light for Sydney have only validated what she’s experienced her whole life. Since childhood, she’s endured countless injuries that others often brushed off or misunderstood.
She suffered frequent sprains, dislocations, and fractures—injuries that occurred far too easily due to unstable joints and overly stretchy ligaments. Her body bruised with the lightest touch, the result of fragile blood vessels and thin skin.
The symptoms she has endured her entire life—constant tachycardia from simple activities like standing or walking, shallow breathing, GI dysmotility, sleep disturbances, temperature dysregulation, joint hypermobility, chronic pain, and importantly the Cranio-cervical instability that has manifested in her neck—were never “in her head,” despite what countless people and healthcare providers led her to believe.
While others bounced back quickly from minor accidents, Sydney’s healing was always painfully slow—her body unable to repair itself properly because of the faulty collagen at the root of her condition. Sadly, she has had to live with these symptoms, with NO answers, until NOW.
It wasn’t until she was diagnosed with Ehlers-Danlos Syndrome (EDS) that everything finally made sense. For Sydney, it explains the chronic pain that has followed her for as long as she can remember, the relentless joint instability, and the dysautonomia—especially POTS—that disrupts her heart rate, blood pressure, and ability to even stand some days.
It should have never taken living with severe pain for Sydney to finally be taken seriously and receive the care she has always deserved. Yet, that is the reality she faces—and she continues to navigate it with more strength and grace than anyone could ever imagine.
What people don’t see is the full scope of this condition: the emotional toll of being gaslit by doctors, the fear of not being believed, and the exhaustion of living in a body that’s constantly working against you.
EDS is not just flexible joints or a rare diagnosis—it’s a lifelong reality, filled with pain, uncertainty, and resilience. And now that she finally has answers, all she wants is a chance to heal.
THANK YOU
Chronic illness and complex medical conditions like Sydney’s don’t just affect the person going through them—they impact the entire family. The emotional, physical, and financial toll can be overwhelming. Between the constant appointments, surgeries, travel, and recovery, everyday life becomes a cycle of survival. It's exhausting, isolating, and at times, heartbreaking. But community can be a powerful force. Your support—whether through donations, sharing her story, or simply offering words of encouragement—helps lighten that heavy load. It reminds Sydney and her loved ones that they’re not alone in this fight. Every contribution, big or small, becomes part of a collective effort to help her heal and regain a quality of life that’s been so deeply affected.
From the bottom of our hearts, we are asking for your help. Every dollar, every share, every kind word brings us closer to giving Sydney the chance she deserves—a chance to heal, to breathe without pain, to live the life she’s worked so hard to build. Your support is more than a donation; it’s a message to Sydney that she’s not alone in this fight.
Thank you for standing with her in this critical moment. Let’s help Sydney get the healing, strength, and hope she needs to move forward.
Helpful and Informative Links
http://www.dysautonomiainternational.org/page.php?ID=30%20#:~:text=Many%20POTS%20patients%20also%20experience,pain%20and%20shortness%20of%20breath.
Organizer
Emily Diamond
Organizer
Huntington, NY