Working through adversity
"Josh is truly an example of working through adversity to live his life to the fullest." Kathy Sanders, school nurse
By Jennifer Archibald Staff writer

Josh Spray and family cat, Butterscotch

Josh Spray is 13 and a seventh grader at Carroll Jr.-Sr. High School. He likes sports, video games, and hanging out with his friends.

He also has a high tolerance for pain, goes to physical therapy three times a week, and gets around in a wheelchair.

Josh has brittle bone disease, officially called osteogenesis imperfecta, or OI.

His parents, Don and Margie Spray of Flora, explain that Josh's body produces mutated collagen, which creates bone weakness, and his body does not absorb calcium like it's supposed to.

Don knows all about OI because he also has the disease, and so does his mother.

The Sprays didn't know Josh had OI until he was nine months old.

"It was Thanksgiving," his mother recalls. "Josh was in a baby walker. He jumped up and when he came down, he broke both legs."

They took him to the hospital, but when the medical staff saw the infant's broken limbs, they felt compelled to call Family Services. Margie said one of the staff had a phone in hand when a nurse intervened.

"She knew our family's medical history," Margie said. Josh was sent to Riley Children's Hospital where he was diagnosed with OI.

Since then, his parents say he has had more than 200 broken bones, all documented.

Although each broken bone has broken their hearts, they can talk about it matter-offactly because broken bones have become a fact of life in the Spray household.

"Until two or three years ago, Josh wore a cast eight months out of the year," Margie said. "Once he wore a cast for an entire year." She said he has had several body casts (from his toes to his armpits).

"When he was in first grade at our old elementary school, he fell off a slide and broke his back," Margie said.

"Ninety percent of his breaks have been his legs," she said. "He has broken his arm three or four times, has broken his back twice, and I couldn't begin to say how many times he's broken fingers and toes."

Don, who has a mild form of the disease compared to Josh, has had around 50 broken bones himself. He said Josh doesn't have to fall to break a bone.

"Any little type of pressure on a bone can cause it to break," he said. Don said his mother can sneeze and break a rib.

"If Josh does fall, there's an 80 or 90 percent chance that something's going to break," Margie said.

"His last major break was last summer," Margie said. "He was getting down off a stool, and got his leg twisted, and it broke."

Braces and rods

She said Josh has worn leg braces since he was about three years old, and has had titanium rods in his legs since he was four. Two rods extend from his hips to above his knees, and two extend from the bottom of his knees to his ankles.

Margie said Josh has been in a wheelchair most of his life. This is because his legs can't support him, and being in a chair helps prevent falls, she said. Since last September he has been able to walk some with crutches, around the house, but he is still in a wheelchair about 90 percent of the time, his mother said.

"There is no real treatment and no real cure (for OI)," Margie said.

Josh has therapy (in a gym and in a pool) three times a week in Kokomo, to help strengthen his bones. In October, he started a new drug treatment in Indianapolis. Don said the infusions are supposed to slow down the body's natural break-down of bones. The infusion takes five hours. Josh will go for the treatment once every three months for three years.

Despite Josh's limitations, his family has found ways to ensure that he gets to do as many activities as possible. As a family, they've gone camping, fishing, visited Disney World and Kentucky Kingdom.

Josh would like to play sports. His mother says he keeps bringing home permission slips, but she has to say "no" for his own safety. Although he has never been on an organized team, he plays a semblance of baseball, football, and basketball with friends.

"Once when he was in sixth grade, the coach let him go in during the last 30 seconds and shoot a basket," Margie said.

He also will get to play in a 3-on-3 wheelchair basketball tourney on March 10. The Carroll Schools are sponsoring the tourney as a fundraiser to benefit Josh and three other Carroll students who are in wheelchairs.

"Kids at Carroll have been real good with Josh," Margie said.

She remembers the time when he was wheeling too fast down the hall in third grade, and he got a "speeding ticket."

The Sprays appreciate the fundraisers that will benefit Josh.

Margie said there are a lot of costs that come with OI.

Expensive disease

"Braces are $6,000 a pair," she said. "It's almost like outgrowing his jeans. If he has a growth spurt or gains weight, he needs new braces." Usually he'll need a couple new pairs a year.

Margie said the rods in his legs cost $15,000 each, or a total of $60,000. So far, they have had to replace three of them.

A new wheelchair is $3,000, Margie said, and crutches are $100. She said the infusions are $1,700 each.

"Trips to the hospital can cost from $200 to $30,000," she said. They have learned to splint the broken fingers and toes at home, but when Josh's breaks are what they call "bad ones," he must go to the hospital.

"I know it's bad when you guys buy me new video games," Josh has told his parents.

Josh has had the same orthopedic surgeon since he was four - Dr. Carlos R. Berrios.

"Joshua is a great patient," said Dr. Berrios. "He's nice to everybody and is always smiling."

Josh's school nurse, Kathy Sanders, also commented on his attitude.

"I have known Josh for many years, even before he came to Carroll," she said. "He is a very social and fun-loving young man. He has a great attitude. Josh generally knows his limitations but as a normal teenage boy, he wants to be involved in everything that his friends are doing. He is truly an example of working through adversity to live his life to the fullest."

Dale Orem knew Josh liked football and got him involved on his fantasy football league.

"I like Josh, " Dale said. "He's fun to be around. He handles his disease extremely well and never complains."

The Sprays say that they try to see that Josh leads as normal a life as possible, and also try to see that his disease and the attention they pay to it does not disrupt his sister's life any more than it has to.

"Josh is like any other kid," Margie said. "He gets into trouble at home sometimes, and he tortures his sister (Shelby), but he's a good kid."

Shelby, age 15, says her situation is different from most of her friends who have younger siblings because when she gets annoyed with Josh, she can't pound on him.

Josh could be concerned about his future, but he says he tries not to think too far ahead. Commenting on a Thursday, he said, "I just think about what's happening today, tomorrow - and maybe Saturday."