Ludington boy dreams of life without epilepsy

November 7, 2013

 

Saturday cornhole tournament to help raise money for epilepsy research. 

Jett Nickelson, 9

Jett Nickelson, 9

LUDINGTON — On Sept. 6, 2006, Jerome and Marnie Nickelson’s life changed forever. Their 2-year-old son, Jett, was having weird spells. “We weren’t sure what was going on, but he kept falling,” Marnie says. “Up until this time, Jett was a normal, healthy child. there wasn’t any reason to think that what was going on with him was serious. Until he started seizing.”

There was no prior medical history of seizures and no obvious reason for the seizure, Marnie says. “The ambulance came to help within five minutes of the start of the seizure and Jett was rushed to Ludingotn hospital.” The EMTs on the ambulance were unable to stop the seizure. Medication at the hospital had little result in stopping the seizure.

He was diagnosed with epilepticus, a life threatening condition where the brain doesn’t stop seizing for more than five minutes. In Jett’s case, it was more than 30 minutes before the seizure stopped with the help of a lot of medication.

“Jett had to be put on a ventilator in order to keep breathing with the amount of medicatoin in his system and then he was air-lifted to Helen Devos Children’s Hospital in Grand Rapids.”

Their life changed forever. Jett was the youngest of four boys.

“With so little known about epilepsy and the brain in general, we were told that we just had to wait and see if it happened again. Jett’s history of status epilepticus is scary, with 20% mortality rate we had to get him treatment right away if he seized again. It took two months before the next seizure came and Jett was diagnosed with epilepsy, which is simply two or more seizures at a time.”

Marnie says there are many causes, and most of the time, like Jett, there is no known cause. “Treatment can vary. It generally involves medications, and in most cases, the seizures will stop with medication. Jett’s didn’t and still haven’t but we are hopeful that epilepsy research will someday allow Jett to live a seizure free life.

Jett, far left, is pictured with his family: Marnie and Jerome (mom and dad), and brothers Joey, 11; Jade, 13 and JT, 15.

Jett, far left, is pictured with his family: Marnie and Jerome (mom and dad), and brothers Joey, 11; Jaden, 13 and JT, 15.

“For now we are doing all we can to raise money for epilepsy research. We understand it may not happen in Jett’s lifetime but for all those kids like Jett who deserve a life free of seizures, we raise money now.”

Jett is now 9 and still lives with epilepsy every day. “He dreams of playing football and taking a bath by himself,” Marnie says.

To help raise money for Citizens United for Research in Epilepsy (CURE), the Nikelsons have organized a charitable cornhole tournament to be held Saturday, Nov. 9 at the Baymont Inn and Suites Convention Center in Amber Township.

Sign in begins at 11 a.m. This is a singles tournament with up to four brackets. Winners will face off for grand prizes. Free entry to the event for music, bake sale, face painting, auctions, door prizes and more.

To enter the tournament, there is a $25 per person tax-deductible fee. Those who wish to donate but not play can do so through CURE.LudingtonCornhole.com or call/text Marnie at 231-690-6131 or email [email protected].

 

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