Darby is a spunky 7 year-old who is full of life and has never met a stranger. At age 3, she began having headaches and vomiting and an MRI revealed Chiari Malformation. MRI results further revealed a syrinx (pocket of fluid) in her spine as a result of her Chiari. In September 2014, she underwent decompression brain surgery where surgeons removed a portion of her skull to create more space and relieve pressure on her brain stem. She was relatively pain free for a year when her pain slowly began to return. After multiple consults with her local neurosurgeon, it became clear that she was a complex case and needed the expertise of a Chiari specialist. This led her parents to transfer her care to one of the top pediatric neurosurgeons in New York City at the Weill Cornell Brain and Spine Center. She has since been diagnosed with a connective tissue disorder, Ehlers Danlos Syndrome (EDS), bilateral vocal cord paralysis, and optic nerve damage. After monitoring her for several years, her neurosurgeon determined that she needs a second brain surgery which is scheduled for June 27th, 2018. Despite her daily struggle with pain, she continues to lift the spirits of those around her. Her joy and passion for life are contagious.