Megan Megale always knew her 12-year-old daughter, Shea, was special — and not just because Shea has a muscular disease that confines her to a wheelchair. But the Virginia mother of three learned just how special Shea was when she came across her daughter’s diary in a closet.
“I was cleaning her room and I found her diary, and I read it,” Megale told TODAY co-host Meredith Vieira during an interview Thursday.
Without her family’s knowledge, Shea was writing about things she would like to do but cannot in stories featuring her dog Mercer, a black silk retriever mix specially trained by Canine Companions for Independence. Today, “Marvelous Mercer,” the first in a series of children’s books based on Shea’s writings, is being released at FAO Schwarz.
Shea was born with a degenerative genetic disease called spinal muscular atrophy type 2 (SMA2). Mercer is not only her companion, but he does things for Shea that she cannot do for herself.
“When I read the stories, I knew after the second one these were all things that I didn’t know Shea was thinking about — that she was doing things — ice-skating, sledding, things that she wouldn’t really be able to achieve on her own, but doing it through Mercer,” Megale said.
“That’s why he has two sets of legs,” Shea explained of her dog — one set for him and one for her.
Shea didn’t think the stories were anything special.
“I never really thought it would turn into anything,” she said. “I was just having fun writing. Little did I know Mom picked it up.”
Megale, who has two other children — a son and another daughter — had worked for 22 years in sales for major pharmaceutical companies and knew more than a little about marketing. She consulted a friend who worked in children’s book publishing, who encouraged her to attempt to publish the stories.
She found an illustrator, Curt Wagner, self-published the book, then took it to one of the semiannual toy auditions FAO Schwarz holds to find new products. Some 5,000 people were at the audition, Megale said in a pre-interview with TODAY.
The standard procedure is for the toy company to send a letter to those who attend to tell them if their ideas are accepted or rejected, but FAO Schwarz bought her idea on the spot.
The result is a contract for a series of six books. The first, “Marvelous Mercer,” is being released at the FAO Schwarz store in Manhattan, along with a plush Mercer toy, and Shea and Mercer will be there to autograph copies.
Shea and Mercer met two years ago during a two-week training camp run by Canine Companions for Independence, and she knew from the moment she met him that he was the dog for her.
“Mercer can do anything that I need to be done,” Shea said. “He can pick things up, open up doors, turn on lights — whatever needs to be done.”
But, she added, what Mercer means to her goes far beyond the things he does to help her. “In all truth, I have my mom, I have my brother, I have my sister and my dad. They can do all that for me,” she said. “But the best thing about Mercer is just having a best friend around.”
She and Mercer have a Web site, where she reports that Mercer knows 60 commands. His favorite, she writes, is “lap,” a signal for him to jump on her wheelchair and put his paws on her shoulders.
Proceeds for research
The Megales, who live in Fairfax County, Va., realized that something was wrong with their daughter when she was 18 months old. The first diagnosis they got from doctors wasn’t good.
“She was actually misdiagnosed at first, and we were told to take her home and love her because we had three months with her,” Megan told Vieira. “She was then re-diagnosed at Johns Hopkins, and we felt we had won the lottery when she was diagnosed with spinal muscular atrophy type 2. Her life expectancy is far greater than we had anticipated.”
The genetic condition is extremely rare, with only about 300 children in the United States diagnosed with SMA2. Because there are so few cases, Megan said, pharmaceutical companies don’t want to invest in expensive research that that will never pay off in profits. SMA2 is progressive, attacking nerve cells in the spinal cord and leading to loss of muscle strength and control. It is considered a terminal condition, but its victims live into adulthood.
With so little public funding available, proceeds from sales of the book will go toward SMA research and to Canine Companions for Independence, which charges only a nominal fee for the highly trained dogs it provides for those with disabilities throughout the country.
“This is kind of an out-of-the-box way to subsidize that funding” for SMA research, Megale said. “It’s a mother’s way of going out of the box and doing everything she can do to get as much funding as possible.”
She said that the book series has been great for Shea on several levels.
“My goal as a mother is to make every day as special as it possibly could be, and this is a great way because it takes the focus off of Shea,” she said.
On her Web site, Shea writes about the things she wants to do in life:
“I want to do things to change the world. I think kids like us can,” she said.