A 14-year-old with a rare disease finds his place and purpose in the arms of a local theater company.
A 14-year-old with a rare disease finds his place and purpose in the arms of a local theater company.
Sharon House vividly remembers the first time she saw JJ.
"He was all hair and eyes," she says animatedly. "He had an Afro even though he was only one month old."
But House also recalls something else: JJ was so little.
Indeed, he was tiny and fragile. Jarell Jatice Michael weighed just 4 pounds at birth at Ohio State University Hospital on April 3, 2002. But it wasn't just his small size that was a concern. JJ had osteogenesis imperfecta, commonly known as brittle bone disease, a genetic disorder occurring in about 1 of 20,000 births.
He came into the world with 37 broken bones, each as brittle as a tiny piece of chalk.
The doctors gravely told his 14-year-old mother that her son would probably not make it through the night.
But JJ made it through that night. And the next night. And the night after that. He was hospitalized for a month. Then, after his teen mother decided she couldn't adequately take care of her severely disabled son, he was placed in a foster home near Centerburg in Knox County, about 40 miles northeast of Columbus.
House was working at the foster home as a licensed practical nurse when JJ arrived. At first, no one knew exactly how to care for the fragile, breakable infant. They carried him gingerly on a pillow; he slept on a big puffy quilt on a changing table. He didn't sleep in a crib until he was about a year old.
When JJ learned to move about, he was everywhere, fearlessly propelling himself along the floor with his arms, dragging his immobile legs. "We had to be so careful when he was little," House says. "He would show up under your feet, under the table. You really had to be on the watch for him. We were always afraid we would break him."
Act One: A boy finds a home
Now 14 years old, JJ is becoming a star, an audience favorite in Mount Vernon's community theater, directing as well as acting, most recently portraying a devilish Cheshire Cat in "Alice in Wonderland." He's also the subject of a documentary film that is picking up awards at festivals around the nation. He manages it all from a motorized wheelchair; his body, while it has grown larger, remains perilously susceptible to broken bones. He is in more or less constant pain, but he has learned to live with it.
"It's hard sitting in a wheelchair watching all the other kids at recess run, jump and be excited," JJ says in the documentary, titled "The JJ Project."
Limitations aside, JJ is a precocious teenager: talkative, full of energy, occasionally bossy with a sarcastic, dry sense of humor. "A little spit-fire," one friend says. "Stubborn," says another. "Sweet," chimes in a third. He dreams of Hollywood, becoming an actor and director or working in animation.
People naturally gravitate to JJ, drawn by his charisma, passion and quick laugh. He is compressed energy, lightning in a bottle. But there's another side to JJ as well, a less outgoing side, quiet, introspective. He occasionally suffers from panic attacks.
"Do your dreams," he says. "Do as much as you can on earth until your time is done."
"If God didn't want us to be here, he wouldn't put us here."
It has been a long journey for JJ, not so much in miles traveled but in obstacles overcome. As the fragile infant grew into a fragile boy, he gradually accepted his lot in life; that he would never walk, play sports or scamper around the playground like other children. His life would always be linked to his motorized wheelchair. Despite monthly shots, his bones would always remain delicate, a threat to snap at any moment. There are no guarantees in life, and JJ knows it better than most.
Tracy Hart, CEO at the Osteogenesis Imperfecta Foundation, says the genetic disorder affects about 50,000 people in the U.S. "Most of the folks are leading exciting, wonderful lives," she says. Still, there are so many complications in addition to brittle bones, including respiratory problems and delicate blood vessels and internal organs.
JJ's life story became permanently intertwined with Sharon and Ray House when he was 6 years old. Although authorities from child welfare worked for years with his biological family in hopes he could live with them, it never took hold. The foster-care system was the only option. He landed in the foster home where Sharon worked as a licensed practical nurse. She and Ray fell in love with JJ almost immediately and soon found themselves discussing the possibility of adopting him. The notion came as a surprise even to them. They were in their 50s and already had raised two daughters, Rachel and Sara. Taking care of JJ would be difficult under the best of circumstances, and Ray wasn't in great health.
But there was something so compelling about JJ and his unquenchable desire to be part of a family. "I was in a foster home as a child," says the soft-spoken Ray. "All children should have a second chance."
JJ was already calling him Daddy Ray.
"I just loved the little guy right away," Ray says. "It was meant to be or it wouldn't have happened."
"We just knew he was our kid," says Sharon, who experienced a difficult childhood of her own. "We thought adopting him was the right thing to do. We knew JJ was special. He wanted to belong to a family so bad."
Once committed, the Houses went all-in. They not only adopted JJ in 2008, but also took on the enormous added responsibility of adopting two other special needs children, Alexzander, 10, and Keyvon, 8, two years later. A new family was born.
There were-and continue to be-struggles in raising JJ. His bones are so fragile even a hard sneeze can break one. He's broken an arm and a leg, though his fractured bones are not put in casts because the pressure could cause even more damage.
JJ attended school for a while, but two boys playing accidentally crashed into his wheelchair, jamming his legs up into his fragile spine, resulting in a compression fracture that forced him to spend weeks in the hospital. Sharon home-schooled him after that.
Act Two: Curtain calling
JJ has dreamed of the stage for as long as he can remember. Entertaining people is his idyllic version of joy. He taped cotton swabs to his stuffed animals as make-believe microphones and built stages for them to perform. He watched "The Lion King" every day until he knew all of the songs by heart, much to his parents' chagrin.
His aunt, Sadie Thompson Hunter, set JJ's dreams in motion when she took him to see the "The Wizard of Oz" and then the musical "Annie" staged by MTVarts, Mount Vernon's nonprofit, volunteer community theater company. JJ's thirst for theater was immediately insatiable. "He didn't just come one night. He came to every show," Hunter says.
Eventually, he mustered the courage to try out for a part of his own.
The plain-spoken Hunter was supportive but realistic with her young nephew. "Nobody is going to give you any credit just because you've got that little wheelchair," she told him.
He auditioned anyway and won a small role in "Cinderella." "He's always been a ham and a performer," Hunter says. "I knew if we could get him into the theater, he would shine."
"He's a spoiled little brat," she continues, "but like my momma said, 'He's not spoiled. He's just overly loved.'"
Performing wasn't enough. He also wanted to direct a play. He was 11 years old and relentless about his ambition. But even to the kid-friendly folks at MTVarts, the idea sounded far-fetched.
"It seemed like it was going to take a lot of effort," says Bruce Jacklin, MTVarts artistic director. "It was not something a theater company would normally do. We had never turned that much responsibility to the kids."
But Jacklin and others in the theater company decided to go along with JJ's idea, putting adults in place to serve as mentors to 30 kids-some as young as 8 years old, who did everything from ticketing, lighting, directing and costuming to choreography and vocal direction.
"We were the safety net for these children," Jacklin says. "It would have been irresponsible to just throw $30,000 at these kids and say, 'Here you go.'"
Jacklin, a public school art teacher, first met JJ when he was in the first grade at Dan Emmett Elementary School in Mount Vernon. "His wheelchair was not motorized at that time," Jacklin says. "His sense of humor was pretty snarky, even as a 6- or 7-year-old. He and I hit it off right at the beginning. He's quite a character."
"JJ's actually a 40-year-old man in a little kid's body," Jacklin jokes. "But sometimes he will get pretty emotional. He's still a teenager."
The theater company decided to let JJ direct "How I Became a Pirate," a charming swashbuckler based on a children's book by Melinda Long and David Shannon. The play has mainly adult actors, so JJ, as director, would have the challenge of dealing mostly with grown-ups.
The folks at Theatrical Rights Worldwide, the company that owns stage rights to the play, were so impressed with the kid-directed production that they waived the royalties, which normally would have cost about $7,000.
The production also caught the eye of documentary filmmaker Matt Starr, who lives in Mount Vernon and is a part of the MTVarts company of actors. It was his vision that led to the filming of "The JJ Project."
Luna Moreland, who at the tender age of 8 was the play's artistic director, is one of JJ's best friends. She says she doesn't see a boy in a wheelchair. "What I see is an awesome person, a sweet person, and such an artistic person."
The other youngsters managing the production weren't much older, ranging up to 14. The production process had its bumps, but the kids took charge, with backup from their mentors, and the job got done. "How I Became a Pirate" staged four performances in the fall of 2013.
On opening night, 700 people jammed into the Knox County Memorial Theatre. The atmosphere was loud, electric and kid-intensive. "There were all these kids dressed up as pirates," Sally Berger of the Ohio Department of Developmental Disabilities, an organizer of the project, says in the documentary. "I've been to that theater for a lot of other productions, and it's a great theater, but I've never seen so much energy."
JJ was understandably nervous, but was still able to joke with an actor who urged him before the performance to "Break a leg!"
"I already broke it," he chirped back.
JJ joined his crew on stage for a glitzy opening musical act, "On Broadway," but spent most of the time backstage, where directors live.
"Theater is just a comfort to me," he says later in the documentary. "It's such a great feeling on stage. The people are best in the theater, especially the little kids."
The play was a huge success among MTVarts patrons, with the audience enthralled by the acting, humor, elaborate pirate ship set and fun songs, including "Talk Like a Pirate," "Green Teeth," "Where Do We Bury the Treasure?" and "Pirates Dot Arrgh."
But not all was as expected for JJ. Near the end of the final performance, his birth mother, uncle and other family members unexpectedly showed up to watch. The relationship between the two families had tended toward the contentious since JJ's adoption, and when he learned they were there, he burst into tears, fearful, he said later, that his biological family would take him away from the adoptive one he had grown to love after five years with them. The tuxedo-clad director of "How I Became a Pirate" was still a scared little boy.
"Do you think they'll follow us home?" JJ says through tears in the movie.
But Hunter, his aunt, intervened, shielding him from his birth family members, who eventually left the theater. "He didn't even get to see the end of his play," she said. "That was his glory."
"After it was all said and done," Hunter says, "JJ still wanted to know what his momma said."
Act Three: The Denouement
Starr is unmistakable as the tallest pirate on stage in "How I Became a Pirate." Starr, a Mount Vernon resident (and former mayoral candidate) who played quarterback in college in the mid-1980s, previously worked with the disabled at the Mount Vernon Developmental Center. He got into acting in community theater in his 20s and has appeared in many local productions (including tall Alice after she swallowed a pill that made her grow much larger in "Alice in Wonderland").
"Being on stage looked like so much fun to me. I said, 'I'm going to put that on my bucket list,' " says Starr. After acting in a few plays, he was hooked. "It felt exactly like running onto a football field. You have a game plan, and you follow it."
In 2000, Starr began working with a business partner making commercials, videos and documentaries. He is now a director, producer and senior partner for I-CONN Video Production and for KeyLight Advertising Agency, both located in Mount Vernon.
JJ's story intrigued Starr, a member of the MTVarts company, not just because it was a boy in a wheelchair directing a whimsical play, but because of the larger-scale drama involving adoption, disabilities, dreams and a small Midwestern community coming together to support its local theater. "It is about how one boy's hope and courage can inspire a community," promotional material for "The JJ Project" exclaims.
"People love this story," Starr says. "It is something that's going to be around long after I'm gone."
Starr and his small crew filmed dozens of hours of rehearsals, performances and behind-the-scenes interviews. Some scenes reveal painful private moments as JJ's frail body is carefully lifted from a van to his wheelchair by his dad. The film is fuzzy at that point because it was shot outside at night, but Starr decided to keep it in the documentary because it reflects real life.
"The JJ Project" had its red-carpet premiere as an official selection at the Heartland Film Festival in Indianapolis, with four showings from Oct. 22–28. It has been making the rounds at film festivals around the country, winning the Award of Excellence in the Accolade Global Film Competition and honors at the Hollywood International Independent Documentary Awards. Starr hopes it will gain momentum and eventually be released commercially on DVD, on-demand digital and aired on independent TV channels.
Act Four: As the Curtain Falls
While things have calmed down a little for JJ, the exposure garnered by the documentary has been "amazing," he says.
JJ and the other youngsters in the documentary attended the October premiere in Indianapolis and took the stage afterward to answer questions from the audience. "Some of the kids were nervous, but I wasn't," he says. "I'm excited about what people think about the documentary and that they are entertained and inspired by it."
"He was in his element," says his mom Sharon. "He liked all of the attention and had a great time."
JJ says he's already working on a new project, a YouTube production about a family of superheroes called The Bolts, which he hopes to have online next year. He didn't have to look far for his inspiration. It's obvious the young actor and director already thinks he's in the midst of a family of superheroes.
"Our family is not just about blood," says Hunter. "It's about who's in your life. It doesn't matter if they're a blood relative or not."
And the people in his life extend beyond those he shares a home with. "The JJ Project" wasn't really just a story about a little boy directing a play. It was about family of all kinds and colors, about overcoming challenges, and about how a little community came together to become pirates for a few nights. It really does take a community to raise a child, says MTVarts business manager Janis Stone, in the video. "JJ is our kid. JJ has grown up with us. We got to know him and we got to love him."
"We never in our wildest dreams imagined something like this would happen," says JJ's dad Ray.
"It's a dream come true," says JJ.