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
At 9 months her head shape is normal.

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