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At just three years old, Emmalyn Freeze began a journey no child should ever have to face. What began with a brain surgery for Chiari malformation quickly evolved into a relentless series of diagnoses and life-altering procedures. Now 16 years old, Emmalyn has endured over 60 brain and spinal surgeries, each one a response to the rare and overlapping conditions that continue to affect her life in profound ways.

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Emmalyn lives with a complex combination of conditions, including Chiari malformation, Ehlers-Danlos Syndrome (EDS), Adhesive Arachnoiditis, Tethered Cord Syndrome, syringomyelia, spinal CSF leaks, pseudomeningoceles, and recurring infections. Her surgeries have included decompressions, tethered cord releases, detethering of nerve roots, shunt placements and revisions, CSF leak repairs, pseudomeningocele repairs, dural patch grafts, and the use of titanium mesh implants to reinforce weakened areas.

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Because her care requires highly specialized neurosurgical expertise, all of Emmalyn’s major surgeries must be performed out of state — often involving travel to multiple hospitals across the country. This means her family is responsible for covering extensive travel and lodging costs in addition to high medical copays — resulting in a massive financial strain that compounds with every new medical emergency.

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The toll on Emmalyn’s body has been staggering. She suffers daily from severe head and spinal pain, nausea, vomiting, neurological deficits, and deep fatigue. Her care team spans multiple specialties, but even with expert intervention, her conditions are unpredictable and progressive. Despite all of this, Emmalyn continues to fight for moments of normalcy and joy — a walk outside, a holiday at home, a good day with less pain.

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Behind every scar is a story of survival. Emmalyn’s journey is not defined by one diagnosis or one surgery — it’s the story of a young girl who continues to face impossible odds with extraordinary strength. Her battle is ongoing, and so is our hope that she finds the healing and support she so deeply deserves.

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Please consider making a donation to Emmalyn's campaign.

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