Defying the odds: Central Lake toddler honored at Gov. Snyder’s State of the State address

CENTRAL LAKE — A smile beamed across Jeremiah’s face as he raced his customized car into a standing ovation at the Michigan State Capitol.

Gov. Rick Snyder met Jeremiah Nelson and his family, of Central Lake, at the end of the aisle, exchanging a high-five with Samuel, Jeremiah’s older brother.

“Those are some cool wheels,” Snyder said, as a room of state lawmakers broke out into applause.

It was Snyder’s final State of the State address on Jan. 23, but one high-spirited 23-month-old boy, who caught his attention in a video prior to the address, stole the show that day.

Jeremiah, who was born March 15, 2016, at Spectrum Health Butterworth Hospital, has myelomeningocele — the most serious form of spina bifida.

Since birth, Jeremiah has endured eight surgeries, and has limited mobility.

Taking on a challenge, FIRST robotics teams from both Petoskey and Central Lake High School headed a project, modifying a “Lightening McQueen” motorized car, specially fit for Jeremiah. The steering wheel of the car was outfitted with a button, which Jeremiah can push with his hand to move the car.

The project was part of Charlevoix-Emmet Intermediate School District’s “Go Baby Go!” initiative.

Snyder invited Jeremiah and his family, including his mother Danielle, father Stacy and brother Samuel, to the Capitol for his final address, even meeting with the family in his office beforehand.

“When I found out about the invitation (to the address) I was shocked and honored,” said Danielle Nelson, Jeremiah’s mother, and a Manistee native. “It’s not every day that you get to meet the governor.

“I am proud of the students of both communities for doing what they did — mobility options for Jeremiah’s size are limited. The first day he got his car, that was the first time he was able to move independently.”

Snyder aimed to show the state what students can accomplish with the proper tools to succeed.

“I want to tell you the story of Jeremiah Nelson,” said Snyder, during his address. “He had an early-on mentor that went out and found two robotics teams, and they customize a car for Jeremiah so he can get around and interact with other kids. Now there’s no manual to do this; this is unique work.

“It’s showing us all what these young people can do when we just provide the form and elements for their success.”

Danielle said it was an honor to join the State of the State address — one that the family would cherish for a lifetime.

“It’s kind of cool because usually no one is allowed to enter or exit during the address,” said Danielle. “I don’t know for sure, but I am going to guess that Jeremiah is the first person to drive a car in the chamber.”

A LONG JOURNEY

During his short lifetime, Danielle said Jeremiah has faced many challenges.

Before his surgery on Labor Day 2016, Jeremiah had no use of his limbs or almost anything from the neck down.

Within his first months after birth, Jeremiah already endured two surgeries.

Hours after his birth, Jeremiah had his first surgery, in which doctors manually closed his spinal cord. A month later, Jeremiah had yet another surgery — a shunt to relieve pressure in his head.

Later on in the summer of 2016, he began to lose function in his right arm, Danielle said.

A third surgery was performed, draining a cyst in his back, which had caused compression in his spine. Danielle said doctors also removed part of his vertebrae, relieving pressure on the nerves.

In order to heal properly, Jeremiah was placed in a body brace, limiting his mobility.

“His third surgery was 13-hours long,” said Dianne Rosenow, Jeremiah’s grandmother, who lives in Manistee. “We sat there and waited all day long for him.”

Danielle said his mobility improved, but later on in fall 2016, he lost all use of his limbs.

In September 2016, Jeremiah had a shunt revision — his fourth surgery. The family celebrated a few days later while, in a video captured by Danielle, Jeremiah was able to lift his right arm.

“We kind of realized at one point that he could not move his arms anymore; he was kind of a limp rag when you held him,” Danielle said. “We ended up meeting a new neurosurgeon, who diagnosed him with a shunt malfunction.

“It was pretty cool to see him after the surgery — we were so proud when he was able to move his arms.”

Another four surgeries were performed from that time, bringing Jeremiah to where he is today.

“This past year, he has really taken leaps developmentally,” said Danielle. “It’s been fun to see him grow and develop, and not just see him try to recover surgery after surgery.”

Danielle said, although Jeremiah has taken on many struggles at a young age, he has many hobbies and still continues to smile.

Jeremiah uses a modified form of sign language to communicate with family; enjoys listening to music, watching “Super Why” and even “Wheel of Fortune”; but most of all, he loves to play with his brother, Samuel.

As for the customized car modified specially for Jeremiah, Danielle said it is one of his favorite toys, allowing him to interact with others on a daily basis.

“If we let him, he would drive that thing all day long,” she said. “It’s encouraging to see him gain some independence. He’s an incredibly social baby, so to get to see him interact with others, that means a lot to me.”

 

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Posted by Ashlyn Korienek

Ashlyn is the cops & courts and city reporter for the Manistee News Advocate. You can reach her at (231) 398-3109 or akorienek@pioneergroup.com

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