Most Shared

text size

Lessons from Sammy

KINGS MILLS, Ohio (Brad Johansen) -- Sammy and Bo have this thing they do.

Rocket ship will shake you up and when you know what both have been thru to make the shaking stop, it makes you smile all the more.

"I knew something was wrong with Sammy a couple of months old. He was my 5th child and he would tremor all the way down to his toes and he would just stare," said Bianca Simonson, Sammy's mother.

Since Sammy never lost consciousness, the doctors told the Simonson's to keep an eye on it, and it should go away. They did... and it didn't.

"When he was a year and a half old, I heard him yell for me about 5 in the morning. Something said 'you need to go in that room'. And when I walked in he was in his crib fully convulsing," said Bianca Simonson.

Sammy had cortical dysplasia. His brain didn't form on the left side. When the neurons from the right side tried to fire to the left, they hit a divot.

"Sporting events, he's dropping to the floor seizing... grocery shopping... driving a car... he's dropping to the floor seizing," said Bianca Simonson.

His epilepsy required four drugs and it only got worse. Until he was hospitalized, suffering 20 seizures per minute. The choices were dwindling.

"When Dr. Mangano started to explain, you want to disconnect my son's brain, wow ..." said Sammy's father, Trenton Simonson.

A functional hemispherectomy. A full disconnect of the left side of the brain in hopes of stopping the seizures.

"He left us seizing. He left us seizing. You're helpless. You're desperate," said Trenton Simonson.

What would you trade to make it stop?

"Your child when he wakes up will be half blind in the right side of each eye. It will never return and he will be basically paralyzed on the entire right side of his body because he has no left brain anymore," said Bianca Simonson.

And since speech is located in the left side of the brain is it possible it could relocate to the right?

"Doctor came in and said, 'Sammy, I'm going to shine this light in your eyes', and this little kid with bandages all over says 'No'!" said Trenton Simonson.

He went a year and a half with no drugs and no seizures. Till a day last February when Sammy told his mom he was feeling shaky again.

"We had a couple days where we just cried," said Bianca Simonson.

The brain disconnect wasn't 100% successful so some of the left side was still trying to fire. But medicine has kept him seizure free since June. And Sam wanted to play football because Bo, a neighbor and senior lineman for Kings, did.

"I can't imagine having a child and seeing them go through pain and anything I could do to help them I would," said Bo Firstenberger.

November is Epilepsy Awareness Month and Bo didn't think many were very aware. So he helped round up his friends, his teammates, his coaches for a night of purple in the midst of red.

"They have had struggles that most people don't realize. As a community we should get together and explain to everyone about epilepsy," said Firstenberger.

The honorary captain, Sammy, gets to join the coach in the locker room for the pregame pep talk. Sammy is the pregame pep talk.

Kings won the game, and Bo is heading to the army after graduation. Sammy's helped teach him his mission.

"I feel like I need to live my life to help people; for the greater cause," said Firstenberger.

"You know Sammy is probably the most thankful of all our kids and has the most joy. And he has the most challenges," said Trenton Simonson.

Challenges. Sammy's on a rocket ship. Buckle up, neither one are afraid of the ride.

Should you feel so inclined, you can make donations to the Epilepsy Foundation of Ohio:

Advertise with us!