Henley underwent a battery of testing in the fall of 2016 in effort to pinpoint exactly what was causing the new symptoms. The family sought out the expertise of a top pediatric neurosurgeon in New York City at the Weill Cornell Brain and Spine Center who specializes in Chiari and Ehlers Danlos Syndrome.
It was determined that Henley would need a second brain surgery to relieve the pressure on her brainstem. The surgery took place on March 8th in New York City. The family was in NYC for a little over two weeks recovering from her surgery. During that time Henley's mother Leslie also had to have an emergency surgery for a life threatening kidney aneurysm.
Because this family knows all too well the kind of needs and challenges a family faces when traveling away from home for treatment, they felt the calling to start turn what was a private fundraising effort into a non-profit where they can continue to raise awareness and raise money to help other families facing significant medical challenges.