LINCOLN, Neb. (KOLN) — In an unassuming Omaha neighborhood, there’s a 7-year-old boy with a handful of loves.

“He really loves to watch volleyball, he loves a cold Sprite, he loves, probably, most every food we give him,” Teddy’s parents said. “He loves the spinning fan.”

Teddy lives with DUP15Q — a genetic chromosome disorder without a cure.

“The kids end up with developmental delay and about 80% of the kids have epilepsy. In the cohort of kids with epilepsy, it’s drug-resistant epilepsy,” Teddy’s mom Liz said. “He also experiences intellectual and developmental disabilities. And that will be a lifelong diagnosis for him and for us.”

A difficult diagnosis, but Teddy’s doctors think medical cannabis could help.

According to the Bronson’s, one child in Nebraska is born with Teddy’s condition every four years — about 36,000 children worldwide are born with it every year.

For Teddy’s parents, Matt and Liz, it has meant living with a son suffering from immeasurable seizures. Any one of them could be fatal.

“These kids that experience this degree of epilepsy — he has about a 15-fold increased risk of S.U. death or sudden unexpected death in epilepsy,” Liz said. “And it’s like seizure SIDS, you know? One night, and he’s gone.”

Liz says the best way to manage that risk is to manage his seizures. A few years ago, the Bronson family had an incredible opportunity to do just that.

They discovered the RNS system, which is a device that monitors electrical activity in the brain to detect when a seizure’s incoming.

When it senses one, the device reacts similarly to a pacemaker by essentially shutting the seizure off.

But there was an issue. The device needs to be surgically implanted in the brain, and the surgery was risky.

“God’s written our story,” Matt said. “Let’s get after it. Let’s just trust the story. Let’s trust this process, let’s do this. Someone has to be the first. Somebody has to be the youngest.”

They went for the surgery at UCLA, and it was a success. Teddy became the youngest person in the world to receive that specific surgery, and the second youngest to get the implant.

An infection set Teddy back about a month afterwards, but it was otherwise smooth sailing for the Bronson family.

“Those initial 28 days before the infection were the best that we had ever lived with Teddy,” Liz said.

Not only did Teddy weather the surgery, but his success even brought a team of experts to Omaha who now help Teddy with his device. Because of Teddy, his parents said other kids in Nebraska like him can get the same surgery without traveling the country.

Then two months after his surgery, the family got a shocking sense of just how sick Teddy really was.

“We got the information off the device that stated 3,800 stimulations in a month,” Matt said.

Each stimulation was a seizure the device detected. Up until then, Teddy had suffered thousands of seizures a month — well over 100,000 in his lifetime prior to the surgery.

Nowadays, Teddy’s only suffering around 20 to 40 seizures in a month. In the time 10/11 News spent with the Bronson family, the RNS device visibly shut down a handful of seizures that otherwise could have sent Teddy spiraling.

With Teddy’s seizure’s largely handled, one might wonder why Matt and Liz are advocates for medical cannabis.

One of Teddy’s many medications includes Epidiolex, an FDA approved cannabinoid meant to treat convulsions in seizures.

The medication is $3,200 per box, according to Teddy’s dad. Matt thinks medical cannabis could be more effective and help save them from billing an extra $21,000 in medications each month.

Not only that, but some of Teddy’s current medications also interfere with his sleep — something medical cannabis could fix.

“Better sleep for Teddy would be a game changer,” Liz said. “That raises your seizure threshold. And we all do better with better sleep. It’s a much better balance for your brain to grow.”

At Teddy’s age, his doctors agree that the more intervention he gets at a younger age, the greater impacts he could see later on.

As he works through physical therapy, his parents measure progress in inches, not miles. And they’re hopeful the inclusion of medical cannabis could be a tool to push Teddy a few more inches.

“He’s a kid that requires what feels like a thousand repetitions to be able to do a skill. Versus other kids it takes like five or 10,” Liz shared. “And so, in the 1,000, maybe we could get it down to, like, 500.”

Liz and Matt also hope the medicine could help Teddy bolster his independence and develop his voice, something they’ve been doing for him.

The family spent time at the state capitol this year advocating for medical cannabis and LB677, even catching up with Gov. Pillen.

“We’re walking to the tiny, little inaccessible capitol bathroom and we ran into our governor,” Liz described. “And he said, ‘Hi, what are you here for today?’”

The topic today is over medical cannabis and the bill giving some framework by Senator Hansen. And he said, ‘Well, what do you need? I can help you get the best medical care in the state.’ And I said we don’t need medical care.”

We do need the people in that legislative session to make some positive progress. And he said, ‘Well, I don’t have any control over them.’ And I said, ‘But you do. You do. You do in how you support this in how you say this is a priority.’”

LB677 only received 22 votes, far less than previous bills to legalize medical cannabis outright.

Right now, Teddy has the ability to make his way through his home and into his bedroom. He’s even capable of a few dozen independent steps, and he knows how many it takes to get from one room to another.

As the Bronson family waits to try a new medicine to help their son take a few more independent steps, Teddy continues to make progress in physical therapy as he approaches his eighth birthday — something his parents are grateful to be celebrating.

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