July2010, Maren went to a friend’s house. While playing on a trampoline, she became very light headed. Her vision blurred and her head began to hurt. Her brother drove to pick her up. As soon as she arrived home we knew something was very wrong. We took her to an Urgent Care where she became much worse with extreme head pain and trembling. She then began having seizure activity and they took her by ambulance to Children’s Hospital in St. Paul, MN. MORE


It all started for Bill after a motor vehicle accident in August of 1995. After being released home from the hospital, he quickly returned to work but the problems were obvious: forgetfulness, leaving his vehicle running in the parking lot, … MORE


Kimberly was diagnosed at the age of three with idiopathic syringomyelia. She underwent a major surgery to have a syrinx shunt placed in 1999 but her relief was short lived. After consulting with a more experienced neurosurgeon, the family learned … MORE


Dana lives in Connecticut and was diagnosed with syringomyelia from C-5 to conus in June of 2008. Her colorful hat hides a shaved head. Severe head pain had her literally “pulling her hair out”, so she finally gave up and … MORE

Keegan and Kaylee

This brother and sister have something in common after all! Both have the same diagnosis. Keegan was diagnosed at the age of eight with Chiari malformation and syringomyelia. He was born with Hydronephrosis, an extra digit, benign heart murmur, allergies/asthma/a … MORE