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Lessons from Sammy

Updated: Friday, November 15 2013, 09:32 AM EST
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 he was my 5th child and he would tremor all the way down to his toes.

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 he called for me, ran into the room and was fully convulsing.
Sammy had cortical dysplasia.  His brain didn't form on the left side and 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. An day to day its devastating for our kids who had no idea what was happening with Sammy.

His epilepsy required four drugs at a time and it only got worse untill 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  ... Thats pretty traumatic.

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.  What's that feeling like.. helpless. You're desperate.

 What would you trade to make it stop?

Your child when he wakes up will be 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 had no left brain anymore.

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 Im going to shine this light in your eyes, and this little kid with bandages all over says no!

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.

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.

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.
Now a days we get too involved in our lives.  We as a community should get involved in spreading the word about epilepsy an do something about it.

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

Tonight Sammy is the pregame pep talk..

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

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

You hope all your kids are healthy when they're born and then something happens.  You know Sammy is probably the most thankful of all our kids and has the most joy.  And he has the most challenges.

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: from Sammy

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