In a quiet neighborhood of Omaha, 7-year-old Teddy Bronson brings joy and laughter to everyone around him. “He loves watching volleyball, sipping a cold Sprite, and enjoys almost every meal we give him,” said his mother, Liz Bronson, smiling. But behind Teddy’s cheerful spirit lies a daily struggle — he lives with DUP15Q, a rare genetic chromosome disorder that has no known cure.

Children with DUP15Q often face developmental delays, and about 80% experience epilepsy, most of them with drug-resistant seizures. Teddy also lives with intellectual and developmental disabilities, a lifelong condition that shapes every part of his family’s life.

A Rare Diagnosis and Daily Battle

Doctors estimate that one child in Nebraska is born with Teddy’s condition every four years, while around 36,000 children worldwide share the same diagnosis. For Teddy’s parents, Matt and Liz, every day is a fight against severe seizures that could become life-threatening at any moment.

“Kids with this degree of epilepsy face a 15-times higher risk of SUDEP — sudden unexpected death in epilepsy,” Liz explained. Managing these seizures has become the family’s top priority.

Breakthrough Surgery Brings Hope

Teddy’s life took a positive turn when he underwent groundbreaking brain surgery at UCLA to receive an RNS (Responsive Neurostimulation System) implant — a device that detects and stops seizures before they escalate.

Following the successful procedure, Teddy became the second youngest person in the world to receive the implant. “The first 28 days after surgery were the best we had ever lived with Teddy,” Liz said. The results were dramatic: his seizures dropped from thousands a month to just a few dozen.

Teddy’s progress has inspired doctors to visit Nebraska to help other children benefit from similar treatments.

The High Cost of Care and Push for Medical Cannabis

Despite the medical progress, the financial burden on the family is enormous. One of Teddy’s FDA-approved medications costs $3,200 per box, totaling about $21,000 each month. The Bronsons believe that medical cannabis could be a cheaper, safer, and more effective alternative to help control Teddy’s seizures and improve his sleep — a critical factor that can help prevent further episodes.

The family now advocates for Nebraska’s LB 677 bill, which seeks to legalize medical cannabis in the state. They hope the law will bring relief not just to Teddy but to countless other families facing similar medical and financial challenges.

Every Step Is a Victory

Even as medical and legal battles continue, Teddy shows remarkable determination. Through regular physical therapy, he’s taking more independent steps every week. As he approaches his eighth birthday, his parents cherish every bit of progress.

“Progress is progress,” said his father, Matt Bronson, “no matter how great or how small.”

For the Bronson family, Teddy’s journey is more than a medical story — it’s a story of resilience, hope, and love, reminding everyone that even the smallest steps forward can lead to the biggest victories.