Beckett’s Story

Beckett is our 1-year-old baby who has tuberous sclerosis complex (TSC). TSC is a genetic condition that causes tubers to grow in various parts of the body such as the brain, eyes, kidneys, lungs, and heart. It is a lifelong condition with no cure. Because of this, Beckett had uncontrolled seizures that began when he was just 5 weeks old. He was misdiagnosed with silent reflux and Sandifer syndrome for 6 months, taking many medications that did nothing for him. My husband and I were on the hunt for answers since the first day he had seizures, and after those 6 months of misdiagnoses, we finally took him to INOVA Fairfax where he was placed on a 24-48 hour EEG. The neurologist confirmed he had been having seizures this whole time and a genetic test was offered as a precaution. This is when Beckett was officially diagnosed with TSC, and our whole world felt like it fell apart. He was taking numerous anti-epileptic drugs for months, even upward to 8 medications at near max doses that still couldn’t help control his seizures. Thankfully, after 2 back-to-back brain surgeries, he is finally now seizure-free! There is always a chance that the seizures may come back, especially if he is weaned off of his anti-epileptic drugs. Because he is diagnosed with TSC, he is still also diagnosed with epilepsy. We know how hard it is to go through life with uncertainty and anxiety, while wondering if or when Beckett’s seizures could return. We are believing for the very best and hope we can be a light and share Beckett’s story as a symbol of hope and perseverance.