Please join me for a very special episode of The Locher Room in honor of Rare Disease Day which takes place on the last day of February each year (February 28). Airdate: February, 25, 2021

Today you will meet two very brave young survivors of Hydrocephalus along with their parents to learn more about this rare lifelong condition that affects over one million Americans from newborn to seniors.

15 year-old Cole Illions is a 13-time brain surgery survivor who will be here with his parents Michael and Kim Illions to share their story and talk about the Pediatric Hydrocephalus Foundation started in Cole's honor. Joining them from Michigan will be four year-old Clara Shanks and her mother Heather and rounding out this panel will be Dr. Amit Ayer whose clinical focus is Neruosurgery, Epilepsy and Stereotactic and Functional Neurosurgery at Stanford University. Dr. Ayer will be here to share insight to help us all learn more about this disease affecting children and seniors alike around the world.

As the name implies, Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although Hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Hydrocephalus is a rare condition that is only treatable through brain surgery and is the number one reason for pediatric brain surgery. Please consider making a donation today to help raise money for funding research projects, to help find a cure and to help find better treatment options for Hydrocephalus. The only treatment right now is brain surgery and the medical device used, which is called a shunt and has the highest failure rate of any medical device. Hydrocephalus is the number one reason for pediatric brain surgery in our country and an average of 40,000 shunt operations are performed each year. The lack of advancements in treatment for Hydrocephalus have left many diagnosed with hydrocephalus unable to lead full and productive lives.