In an unassuming Omaha neighborhood, a 7-year-old Omaha boy named Teddy Bronson lives surrounded by love, laughter, and hope. “He really loves to watch volleyball, he loves a cold Sprite, he loves probably most every food we give him,” said Teddy’s mom, Liz. “He loves the spinning fan.” But this cheerful Omaha boy also lives with DUP15Q, a rare genetic chromosome disorder with no cure.
“The kids end up with developmental delay and about 80% of the kids have epilepsy,” Liz said. “In the cohort of kids with epilepsy, it’s drug-resistant epilepsy.” Teddy also experiences intellectual and developmental disabilities, a lifelong diagnosis that impacts every part of his family’s life.
Doctors believe medical cannabis could make a difference for this brave Omaha boy. According to the Bronsons, one child in Nebraska is born with Teddy’s condition every four years, and about 36,000 children worldwide share the same diagnosis. For Teddy’s parents, Matt and Liz, each day is a battle against seizures that could be fatal at any time.
“Kids that experience this degree of epilepsy have about a 15-fold increased risk of SUDEP — sudden unexpected death in epilepsy,” Liz explained. Managing seizures is their best defense.
That hope grew when this Omaha boy underwent a groundbreaking surgery for an RNS system a device that detects electrical activity in the brain and shuts seizures off before they escalate. After successful surgery at UCLA, Teddy became the second youngest person in the world to receive the implant.
Those first 28 days after surgery, Liz said, were “the best we had ever lived with Teddy.” The device helped drastically reduce his seizures from thousands a month to just a few dozen. Because of this Omaha boy, experts now visit Nebraska to help other children receive the same life-changing procedure.
Still, medical costs remain overwhelming. One of Teddy’s FDA-approved medications costs $3,200 a box, adding up to $21,000 a month. The Bronsons believe medical cannabis could be cheaper, safer, and even help the Omaha boy sleep better — something that can raise his seizure threshold.
The family advocates for Nebraska’s LB 677 bill to legalize medical cannabis.
Despite setbacks, this determined Omaha boy continues to make progress in physical therapy, taking more independent steps every week. As Teddy approaches his eighth birthday, his parents celebrate every inch of progress. “Progress is progress,” Matt said, “no matter how great or how small.”
For this Omaha boy, each day is a victory and a reminder that hope can live even in the smallest steps forward.