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Teacher, students raise awareness

Students write book to raise awareness

Mighty Mito is not fun.
Mighty Mito does not get things done.
I can’t always play.
I have to stay,
even on the finest day.
Some days are fun,
when I have the energy to run.
Some days are sad,
when I just feel really bad.
Even though I sometimes cannot run,
I always end up having fun!

This is an excerpt from the book, “What is Mitochondrial Disease,” created by the fourth-grade students of teacher Melody Nebel and student teacher Grace Springer at Dames Ferry Elementary School in Gray, GA. The book, in honor of classmate Jorja Marsh, was completed in April 2017.

Jorja’s mom, Amber, still gets choked up talking about the service project Grace organized.

“I cried more than a handful of times about this project,” the Jones County, GA, mom said. “It was awesome. I am so thankful for Grace’s idea.”

When Grace met Jorja, she had never heard of mitochondrial disease. “I thought, ‘I don’t know what mitochondrial disease is’; the students didn’t know why Jorja wasn’t always there, why she misses school,” Grace said.

So she came up with the book idea, which has been raising Mito awareness ever since.

Grace talked to Amber first to get her OK on the project. “Students see Jorja at school; sometimes she’s in a wheelchair, sometimes she’s walking; sometimes they see her with a mask on and sometimes with it off,” Amber said. Last year, Jorja attended school on Wednesdays only. 

“Jorja was really excited about the project,” said Amber, noting that Jorja was also a little shy about being in the book. 

“It’s a great way to raise awareness,” Amber said. “Students feel a sense of ownership and pride and talk to their families. It’s a great way to spread the word.”

Grace asked Amber for a suggested reading list about mitochondrial disease. Amber sent her the following titles:

  • “My Mighty Mito”
  • “Mito & Me”
  • “Mighty Mito SuperHero”
  • “Sports Impossible”
  • “A Bike to Call Their Own”
  • “Peach”

Amber also suggested she reach out to MitoAction for materials. 

“I started out with children’s books,” Grace said. “We talked about mitochondria in the cell. That’s hard for fourth-graders to understand.” So Grace used the battery analogy with the kids. 
The students looked at the books about Mito and read over the MitoAction materials. Jorja’s mom addressed the class and handed out T-shirts.
The students did research, brainstormed questions for Jorja’s mom, wrote articles, drew pictures, and created games that don’t require a lot of energy. Grace typed up the book, laminated it, and had it spiral-bound.
“The kids now understand what mitochondrial disease is,” said Grace, who graduated from Georgia College. “They have a better understanding of why Jorja is not always at school.”
The project has also allowed the students to develop empathy, she said. 
Jorja was hospitalized shortly after the book came out. “Lots of kids did get-well cards for her,” Amber said. “It was the first year students reached out to her to check on her.”
Amber is grateful for this project. “If one person gains knowledge from this project, the point has been served,” she said. But it’s gone way beyond that. Amber is still getting comments about the book. “It’s a conversation starter,” she said. 
“I’m stoked about the awareness being raised,” Amber continued. “It touched my heart in a way I can’t describe because you don’t understand unless you’re in our shoes.”
The book continues to raise awareness as Grace has a copy of it in her own fourth-grade classroom at Eagle Spring Elementary School in Byron (Houston County), GA.
“The more people know about [mitochondrial disease], the easier the hurdles are to jump,” said Amber. “I give praise to Ms. Springer for a great service project. Her idea was genius!”
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