'I just want him to know he's not alone'

Mothers seem to have a sixth sense when something is wrong with their children.

It was just a fever, Vincent “Vinny” Lucari’s pediatrician told his mom, Jordan Lucari. It was January and the flu had been making its rounds. As long as Vinny wasn’t throwing up, his pediatrician said he should be fine.

But Jordan’s instinct told her otherwise.

“I had a feeling something wasn’t right,” she said.

When the fever didn’t go away after a few days, Jordan made an appointment for Vinny to see his pediatrician. The last thing she expected to hear was that her previously healthy 7-year-old boy was having seizures.

“My world was crushed,” she said.

She decided to get a second opinion and was told Vinny was possibly suffering from night terrors. But still, no one could diagnose exactly what was happening to her son. So she took matters into her own hands and began digging through Vinny’s medical records.

“Everybody thought I was crazy,” she said.

She discovered the doctor who had suggested night terrors had witnessed Vinny experiencing seizure activity, but didn’t notify her. She knew there was more to Vinny’s condition.

“I’m a problem solver and I can’t fix him,” Jordan said. “There’s nothing you can do as a parent but lay there and watch it happen."

Finally, an electroencephalogram — which monitors electrical activity of the brain — confirmed that Jordan’s instinct was right.

In July 2018, Vinny was diagnosed with epilepsy.

“He went undiagnosed for seven months, which worsened my son’s condition,” Jordan said. “I lost my son a year ago. He’s not the same kid.”

Vinny’s condition has not only affected him but his whole family. Jordan had to quit her job until they were able to find a diagnosis. Her father and stepmom sold their home in Louisiana and moved in with Jordan and her husband to help take care of Vinny.

Vinny is now on anti-seizure medication, but it doesn’t mean his life is back to normal.

“He can’t do what other kids can do,” Jordan said. “He can’t go swim without a life jacket anymore. I mean he can but he can’t. He can’t take a bath."

But through it all, two things have remained the same for Vinny. His generous heart and his love of Nerf guns.

“He has a whole shed for his Nerf guns,” Jordan said. “We have Nerf wars all the time, that’s his escape.”

The family had also planned to take Vinny to Disney World for the first time in March as a part of an epilepsy event, but had to cancel due to the cost of his medication. Instead, Vinny decided to raise money for the Walk the Talk for Epilepsy event that will be held in Pensacola on May 4.

He has an initial goal of $2,000, but Jordan said it would be nice if they could raise more.

“I just want him to know that he’s not alone,” she said, “just to see a smile on his face.”

Vinny’s sense of humor hasn’t diminished either. When asked why he wants to raise the money, he initially laughed and said “so I can spend it on Nerf guns,” but quickly added “to donate to other people like me.”

To donate to Vinny’s walk, visit www.epilepsyfl.com/walkthetalk, click on the Pensacola walk and enter “Team Vinn-Pack” in the team names box or call Jordan Lucari at 428-5537.