KSS Patient and Mom Talk About Self-Publishing Their “Children’s Chapter Adventure” Book
Thomas Gordon is not your typical author. Diagnosed with the mitochondrial disease Kearns-Sayre syndrome in 2014, he lives life totally blind, relies on hearing aids, and cannot walk, hold a pen, or type.
But none of that has made a dent in his creativity.
“He’s always been full of personality and extremely smart,” said his mother, Melissa.
With her help – and “some arguing back and forth,” she laughs – Thomas, now 21, wrote Pearl Tides and the Search for The Pahunas, a “children’s chapter adventure book” about friendship and bravery, all set in an underwater world.
The self-published book, which is now available on Amazon, took six years to complete.
Choosing the DIY route required a lot of patience. “But we kept going,” she said. The family did hire a few professionals, including an editor and an artist for the book cover, to make it look and sound professional. All-in, they spent a few thousand dollars.
It’s a process they would recommend to anyone in the mito community interested in becoming an author.
“Thomas is so proud of himself. And it was a lot of fun.”
