Internet Turns Boy Into World Traveler Despite Disease

By Larry Ciptak

Pittsburgh Post-Gazette

December 17, 1997

For a fourth-grader, Johnny Ellis sure gets around.

For a kid who can take only a few 1 steps even with the aid of a specialized walker, Johnny's world-traveler status is remarkable.

In an era when technology often is misunderstood and sometimes feared, he and his family are using high technology's crown jewel — the Internet — to open up the world.

Johnny, 9, the son of Ken and Roxanna Ellis of McMurray, is an inquisitive child whose physical activity is severely limited due to a mysterious genetic affliction.

He was born with osteogenesis imperfecta, a rare disorder sometimes called "brittle bone disease." Estimates are OI, which has no known cure, afflicts at least 20,000 Americans. It causes bones to break  easily, often from little or no apparent cause.

Johnny had multiple fractures even before birth and has suffered more than 50 fractures since then.

He has had extensive dental surgery, been in a body cast six times and has frequent and painful arthritis attacks.

He has specialized metal rods in both femurs, which keep his bones in alignment when he breaks the upper part of his leg but don't prevent breaks or reduce pain.

But it is clear from watching Johnny in front of his computer that he feels he can go anywhere he wants. He has been computer liter-ate since age 5 and maneuvers his way about cyberspace like a veteran.

"I learned to use the computer myself," Johnny proudly claims. Well, sort of. His school aide at McMurray Elementary School taught him the keyboard via a typing tutorial program, and his brothers Jim, 24, and Daniel, 20, have been showing him some tricks.

Generally, though, Johnny watches over his brothers' shoulders, then attempts similar tasks later when he is behind the keyboard.

Roxanna Ellis says Johnny knows his stuff. "When I'm stuck on something, [Johnny] will tell me, 'Mom, I can fix it,' and he usually does. He'll sit in front of the computer for hours and hours, if I let him."

Mom is a real estate agent with Century 21 Frontier Realty in McMurray and a registered nurse at the University Allegheny Medical Center in Canonsburg. Dad is senior electrical engineer for Dupont Consol Bailey Division.

The Make-A-Wish Foundation provided Johnny his computer.

Besides his desktop unit, Johnny uses a Macintosh laptop computer for school work. The laptop is equipped with a voice-recognition program should he encounter a fracture that prohibits him from using his hands.

Johnny, like many kids, has been using computers for school work since kindergarten. He visits the "homework help" area for academic assistance.

But games are what he really likes about the computer. "There are lots of neat games on the Internet," he says. While almost any game suits him, his parents like his using Math Blaster, Kid Pix and other educational programs.

Then there's the World Wide Web and e-mail.

"Bonelinks," the Web site of the Osteogenesis Imperfecta Foundation, helped the Ellises make a few close friends now integral to their OI support system.

Family members have received e-mail guidance from the foundation in helping them determine Johnny's special school needs, posted a wheelchair lift for sale (they're saving for a new lift van), and keep in contact with relatives in other states they see only every few years.

Through the Internet, a store owner of Pacific Pools in Latham, N.Y., learned about Johnny and has committed to sending a new pool liner, although they still need some-one to install it.

"Our pool is on the blink," Roxanna Ellis says. "And water therapy is the best therapy for Johnny."

She uses the Internet extensively for her work with Century 21 Frontier Realty, especially for the company's relocation services. Frontier Realty also gave Johnny his own home page on the Web. "My husband tells his friends he's lost his wife to the Internet."

"Johnny can't run and play like the other kids, so the Internet is a positive and educational outlet for him, and it's fun," says his mother.

x     x     x

Johnny's e-mail address is: John-Camron@aol.com. His mother's is: ROXLLE@aol.com.

Johnny's Web site is: http://ww.c21frontier.com/johnny/

The foundation's Web site: www.oif.org and its e-mail: Bonelink@aol.com

Osteoporosis and Related Bone Diseases: www.osteo.org

Larry Ciptak is a free-lance writer.