Some children in our community are still in the fight. Children like Owen who was diagnosed with focal epilepsy and infantile spasms at only eight-weeks old. By April 2021, Owen had failed steroid treatments, eight different anti-seizure medications drugs, a medical ketogenic diet, a variety of holistic attempts, and therapies of all kinds.
Each brought only temporary relief.
After a surgical evaluation and second opinion at a level 4 facility with an experienced surgical team, Owen had a full corpus callosotomy. The hope was that by disconnecting the largest fiber tract between the left and right hemispheres of his brain, Owen’s seizures would be reduced. The team might also be able to pinpoint where the seizures start before the spread to the other side of the brain.
Unfortunately, Owen continued to experience infantile spasms and tonic seizures after surgery. And the source of the seizures was still a mystery.
Owen was evaluated by three teams from across the United States – and each had varying opinions on subsequent steps, including the potential of a hemispherectomy. In October 2021, Owen’s parents decided they could not move forward with another brain surgery unless their team of experts was unanimous. That’s when we granted them the Dreams for Danny scholarship that allowed them to travel to UCLA for another surgical evaluation.
After three days of scans and testing, it was decided that Owen was not a candidate for subsequent surgeries due to bilateral seizure activity that continued after his corpus callosotomy.
“While this wasn’t the response we were hoping for, it was a relief to have a concrete answer so that we could explore other avenues.” The Brain Recovery Project was specifically “a critical support for my son’s most recent surgical evaluation – the scholarship they granted us lifted the financial burden from an already emotional and stressful trip as we were considering a second brain surgery for our son.”
Thank you to all the donors who support Dreams for Danny scholarship program. You’re giving answers to families of children like Owen.
More than 3,500 children in the United States are diagnosed with drug-resistant epilepsy each year. Many families face financial barriers to get to an experienced center for an epilepsy surgery evaluation. To support families like Owen’s, you can make a one-time or monthly gift to Dreams for Danny, our surgical evaluation scholarship program. Give to this impactful program here.