Stories

My name is Mary Kathryn and when I was 15 years old I started feeling very nauseated every morning when I woke up. I then was being worked up for gastro-intestinal problems and wasn’t getting better. A week before my first semester finals freshman year I was diagnosed with a Chiari Malformation…. Read More

MK, Chiari Malformation, Denver

I had experienced headaches my entire life, and it became a normal part of my life. It wasn’t until I was 12 that I realized something wasn’t right. My headaches had increased in frequency and pain level, always located at the back of my head. I experienced fatigue, nausea, and loss of coordination and appetite among other painful symptoms. Read More

Jenna, Chiari Malformation, Denver

Claire Eleanor. This is my beautiful daughter’s name. Let me tell you a little about her.  She is almost 5 years old and loves to ride her bike, play with her baby dolls as well as her 3 brothers and LOVES to eat the marshmallows out of Lucky Charms cereal!… Read More

Claire, Sagittal Synostosis, St. Louis, MO

Hi- Our beautiful son has hydrocephalus. We were 27 Weeks along when our little boy was diagnosed with Severe Hydrocephalus. We had just had an ultrasound two weeks earlier due to a polyp and there had been nothing wrong. In just two weeks our lives would be changed forever…. Read More

Jonah, Hydrocephalus, Denver