Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Emma's story started about a year and a half ago. After countless blood tests, MRI, MR Spectroscopy, CT scan, Lumbar Puncture, muscle biopsy, whole exome sequencing, and several genetic testings; Emma was diagnosed earlier this year with a degenerative brain disease. She has calcifications in the basal ganglia of her brain. She lives in chronic pain, experiences severe headaches, muscle and nerve pain, absent seizures, hallucinations, and memory loss. We are seeing top neurologists, geneticists, and neuroscientists in our state, Johns Hopkins, and Mayo Clinic.