At just 4 months of age, Peter’s parents noticed a slight droop to one of his eyes. His pediatrician consulted an ophthalmologist who quickly ordered a MRI and lab work. Although Peter was a thriving newborn, the doctor was concerned there could a tumor compressing the nerve to his eye. […]

At 9 months old, it became apparent that something was abnormal about Taylor’s eyes. His family had done countless tests and retests — and the best answer they were given was “it could be” a number of rare genetic eye defects. They worked with geneticists locally who left them with […]

At 30 weeks into the pregnancy, we learned that there was something very wrong with Isaac’s kidneys. On a late Thursday afternoon, doctors told us that Isaac had severe dilation of his kidneys and bladder, but an exact cause and outcome were less than clear. His left kidney was badly […]

In May 2009, 5-year-old Braeden complained of a back and neck ache. Little did he know that he would soon be only the 12th case in the world of Atypical Ganglioneurocytoma, a rare form of cancer. Barely able to lift his head, his mother Tanya took him to his physician, […]

This is the story of Ezra as told to us by his parents, Ryan & Bobbie: The last thing a parent wants to hear is, “Your child has a rare genetic disease and will struggle with seizures the rest of his life.” However, that is what we were told when […]