A complicating factor in getting a dx was the arrival of Matt’s brother, Mitch, 18 months after Matt’s birth. While Mitch was seemingly healthy (especially compared to his older brother!), subtle signs of an equally distressing disease began showing themselves right about the time Matt was successfully decompressed at age two. Fifteen harrowing years later, Mitch, too, underwent surgery and was implanted with a next-gen Aspire Vagus Nerve Stimulator to control his intractable abdominal epilepsy symptoms. Like Matt, he now lives a full, symptom-free life!
Both of these journeys led Lory and Rob to gather a robust network of physicians and caregivers they now call friends, some of whom joined Lory in 2007 to form an organization known today as the Bobby Jones Chiari and Syringomyelia Foundation. It is, by all accounts, the most well-known and respected resource for patients, caregivers and physicians looking to expand their knowledge about Chiari malformation.
Lory and Rob both remain active in the Epilepsy Foundation as well and are grateful for all the epileptologists, neurologists, neurosurgeons and neuroscientists who rallied behind them to tackle the complex medical problems in their family.
