Emily's NYC Surgery: A Call for Support

Could you take a moment to read? Our dear friend, Emily, is preparing for brain surgery and could use your help, both through prayers and financial support. For many years, Emily was part of the youth group at PBC that my husband, Pat, and I lead. We have watched Emily grow into an amazing young woman who now serves the students that are part of our youth group. Would you be willing to help make this difficult journey that she is about to go on a little bit easier?

For more details about Emily’s story, please read below:

Emily is 20 years old and battling a rare and complex brain and spine condition. In October of 2024, Emily was diagnosed with a rare genetic condition called Ehlers Danlos Syndrome at The Mayo Clinic in Florida. Two months later in December of 2024, it was discovered on MRI’s of

her brain that Emily had a Complex-Chiari Malformation with posterior compression of the brainstem, complicated by Craniocervical Instability with ventral compression of the brainstem

and spinal cord. Chiari Malformation is a congenital skull deformity that has allowed Emily’s cerebellum to push through her skull base into her spinal canal. She also has a retroflexed odontoid (C2, top of her cervical spine) that has made her cervical spine unstable, created an obliterated spinal cord space at the base of her skull and is kinking her brainstem. In January

2025, Emily consulted with an expert neurosurgeon in NYC at Weill Cornell Medicine that confirmed all of the above and additionally, she learned that the compression on her brainstem

is also completely blocking cerebral spinal fluid (CSF) from entering the brain and this is causing significant neurological deficits and symptoms. On March 28, 2025, it was decided upon that a team of three expert neurosurgeons in NYC at WCM would together perform a life changing,

complex brain and spine surgery in June to include a craniotomy and posterior brain

decompression, while also performing a suboccipital skull to spine fusion to relieve compression of the brainstem and prevent further irreversible brainstem and spinal cord damage. Only 10% of Chiarian patients require this rare and complex additional fusion surgery. It comes with many risks and complication rates are fairly high, thus the importance of seeking expert

neurosurgical care more than a thousand miles away at Weill Cornell Medicine. This surgery and recovery will be extremely costly as it will include staying in NYC for 2-3 weeks while Emily

recovers from surgery and manages pain in the ICU at New York Presbyterian Hospital. There will be many flights back and forth for continued care and follow up over the next year.

Emily is newly married and a full-time college student in her third year at Georgia Southern University. Despite the overwhelming pain and health challenges she endures, she has earned

placement on the Dean’s List every semester she has attended and has also been inducted into two National Honor Societies; Phi Eta Sigma and Psi Chi (International Honor Society in Psychology). Emily and her family covet all prayers and appreciate all of the help offered to them in this journey.