It’s hard to remember where our journey with epilepsy began. It feels like it’s been going on forever now. Our beautiful and brave son Ben was just 13 when he had his first seizure. After his second seizure, he was started on Tegretol. Over the following weeks, he experienced many more seizures, but eventually, he became seizure-free for two years.
During that time, he was able to live his life. We were told his epilepsy was puberty-induced, and that we could begin weaning him off the medication. Sadly, within a week of weaning, everything changed. The seizures came back worse than ever. He began having multiple types of seizures, collapsing around the house, even falling through walls. There were many trips to the hospital. He was put back on Tegretol, but it had no effect.
After that, he went through a long and heartbreaking process of trying various medications and combinations, but nothing worked. In 2004, Ben had a frontal temporal lobectomy to remove the area of the brain where the seizures originated, in the hope of stopping them. Sadly, that was just the beginning of even more challenges.
After the surgery, Ben suffered a serious brain bleed, fell into a coma, and then developed a brain infection that eventually ate through his skull. A titanium mesh plate was used to replace the damaged bone. He had IV antibiotics and spent many long months in hospital. Despite everything, the seizures continued—every day and every night.
In 2006, he had a VNS (Vagus Nerve Stimulator) implanted to try to reduce the seizures, but unfortunately, it didn’t work. We made many more trips to Austin Hospital, and we are so grateful to them. They are truly amazing and have done so much for us.
In 2015, Ben underwent deep brain stimulation. Sadly, the infection returned. All the DBS hardware had to be removed, along with the titanium mesh plate in his skull. He spent more months in hospital, received more IV antibiotics, and yet the seizures still continued daily and nightly.
We are currently back at Austin Hospital for more monitoring, as Ben’s epilepsy is worsening. He is the bravest young man you could ever meet. He’s always smiling, and his smile lights up the room. He now has to wear a hard-shell helmet because he collapses without warning and often falls into walls.
A cure would be life-changing—for Ben, and for the many other brave families we’ve met on this journey. Ben requires 24/7 care. We dream of taking him on a big holiday and showing him the world, but without a cure, he sleeps most of the time and continues to battle constant seizures.
Please, keep working toward a cure. We want Ben to have his life back. We will never give up.
Thank you.