TAMPA — When Makenzie Lawrey’s younger brother, Gavin, was diagnosed with Mitochondrial disease two years ago, she didn’t understand what it meant.
Her parents had a hard time explaining to her the mitochondria in her brother’s cells — responsible for producing energy and supporting growth — were failing. Nine-year-old Makenzie didn’t immediately grasp that the disease is sometimes fatal, or that it can cause symptoms such as seizures, muscle weakness or heart problems.
But once Makenzie did understand the diagnosis, she knew she wanted to do something about it.
Her self-published book, “Mighty Mito Superhero,” came out in January and, so far, she has raised about $43,000 through sales and donations. Her goal is to raise $1 million by next January to help pay for research to find a cure for Mitochondrial disease.
Makenzie, who is in fourth grade this year, spent her last summer vacation working on the 26-page book. She wrote it so other people could understand what the disease, or Mito, is all about, she said.
“I wrote it to help them, and all the money is helping them find a cure,” Makenzie said Saturday morning.
She and her family drove up from their home in Cape Coral on Friday night so they could participate in the Energy for Life Walkathon at Al Lopez Park, hosted by the Florida chapter of the United Mitochondrial Disease Foundation. Makenzie spent the morning selling signed copies of her book for $14.
She used different colored markers to sign her name meticulously on the inside cover and had them ready on the table for waiting customers.
Since her book release in January, Makenzie has sold about 1,600 copies, said Brandi Lawrey, her mom. On Saturday, people at the Walkathon bought about 40 books. The proceeds will benefit Mito research and go toward Makenzie’s fundraising efforts.
“When they found out she had this lofty goal, they invited her to participate,” Brandi Lawrey said.
Makenzie worked on her book on her own, her mother said. She went on Google and exchanged emails with her brother’s doctor to learn more about Mito.
“She wouldn’t let me help her,” Brandi Lawrey said.
The superhero in the story is modeled after and designed by 6-year-old Gavin, Brandi Lawrey said. His signature is printed on the cover of each book, and he worked with the illustrator for weeks to get the look of his hero just right. The cover of the book is green, the color for Mito awareness.
Makenzie said her next book probably will be a chapter book about her entire family and how the disease has affected them. But she probably won’t get to work on that until she has met her fundraising goal next year. She plans to participate in other events such as the walkathon and continue to help spread awareness of Mitochondrial disease.
Gavin loves the book and all that his big sister has done for him, Brandi Lawrey said.
“He thinks this is very cool,” she said. “He liked that she did something special with his superhero.”