By Josh Ellerbrock
Published in News on June 2, 2013 1:50 AM
Cameron Hope, 8, and his sisters, Courtney, 6, and Briana, 11, play with wrestling action figures in his floor of his room. Cameron has a disease called osteogenesis imperfecta that makes his bones more susceptible to breaks and fractures.
Cameron Hope rushes to find his self-made maple seed, a simple construction of paper with a snip and a fold here and there designed to drift slowly to the ground -- just like its namesake.
It doesn't work the first time, but Cameron is undeterred.
Another toss, then another and still, nothing.
Deciding it must be the construction, Cameron, eyeglasses askew, runs to the kitchen for another prototype. The scene is repeated until, finally, success -- a full minute spin.
Satisfied, Cameron hops up onto his seat, restless as any 8-year-old boy.
And that's when he tells the story of Wishbone Day -- like it was just any other and like he was not the star of the yellow-themed honorarium.
"We ate yellow cupcakes and had a presentation," Cameron began, describing the details that matter to an 8-year-old.
"Tell him what you did during the presentation with the chips," chimed in his mother, Becky Hope, from other side of the room.
"We had a plain chip, and we had Ruffles, and we dipped the chips into dip, and Ruffles didn't break and the plain chip did," Cameron said.
"Tell him what the chips mean," Becky added.
"The Ruffles were like everyone else's bones and the plain chip was like my bones," Cameron explained matter-of-factly, eager to move on to another adventure.
Cameron has Type III osteogenesis imperfecta.
Also known as brittle bone disease, osteogenesis imperfecta is caused by a lack of collagen, or connective tissue, throughout the body, which creates glass-like bones.
Cameron's case is on the severe side of moderate, meaning easier breaks and fractures, stunted growth and a blue-ish tint to the whites of his eyes.
It also means a more painful life -- one spent in and around hospitals with the added stigma of being a little different and misunderstood.
But Cameron does not let his disease slow him down.
He likes basketball and wrestling. He recently got a basketball pole in the back yard to shoot hoops. He likes Duke University the best. (His dad named him after Cameron Indoor Stadium). As for wrestling, he likes "The Prototype" John Cena. Sometimes, he fake wrestles with his father. His favorite subject is physical education, and he likes to play outside at recess.
His parents don't let him play organized sports, however. He's likely to break a bone or two if he isn't careful. Earlier this month, he got a cast removed from his arm after an injury caused by some rough-housing with his dad.
"We were just playing," Cameron said.
School doesn't slow him down either. During recess, if he's not nursing a broken bone, he's out there with the rest of his classmates. Sometimes, they help him by carrying his bookbag and making sure he doesn't get jostled.
"He tries hard to keep up with everyone, but he misses a lot of outdoor time," his second-grade teacher, Carolyn Smith said. "When he does go outside, he's wide open. He plays the things the other children play."
"He's pretty well off," said Cameron's father, Allen Hope. "Some years since he's been in school, he's been in casts during field days. It's kind of frustrating for him."
And for a second-grader, he's fairly personable, unafraid to tell doctors and nurses what he wants.
He knows that a heel cast is much more comfortable than one that goes above the ankle. He's had a cast in almost every color, "except that nasty brown."
He can tell you what a fracture feels like; he deals with them on almost a daily basis. He's spent some time in a body cast and knows how to get along in one -- using an army crawl, a technique he eagerly demonstrates. He has even raced in a wheelchair.
"I don't rush him to the hospital every time he breaks," Becky said. "I'd be at the ER every day."
Bottom line is: Cameron is tough.
"He doesn't seem to let his disease slow him down. I've never seen him sad -- even when he's in pain. He never complains. He just says he needs his medicine," Mrs. Smith said.
Cameron has stubbed toes, broken them and kept on playing. His knee popping out of joint isn't enough to stop him. His most common bone break is the femur, the thickest bone in a normal person's body. He's shrugged off breaks that leave teenage boys in tears.
"People say to me, I can't believe you let him play in the park or play outside. I don't want him to live in a bubble. He's not going to be a football or NBA star," Becky said.
Cameron has had his share of danger. Time and time again, Becky has been told that Cameron wouldn't make it. In fact, he was expected to die before he had even begun to live.
In 2005, Becky and Allen were getting ready to bring their first boy into the world. But there was a problem. A prenatal exam showed that both of their infant's femurs were broken in the womb. It wasn't a huge surprise. Osteogenesis imperfecta is genetic.
Allen got the defective gene that causes osteogenesis from his 60-year-old mother, Ida Hope, who has dealt with the disease her entire life.
Allen, however, doesn't have the disease. Even after a stint in the military, Allen has only broken a single bone -- during an incident as a child with a hyper dog.
Yet three of his five children have the disease. Two girls from another marriage, Kimberly and Brittany, also have inherited the condition.
"I'm the carrier," Allen said. "I could have 10 children and none could have it, or they all could have it. It's 50/50. It's like Russian roulette."
Yet Cameron was born alive, in pain, and ready to defy the odds. Raising him, though, has come with challenges.
"It's just the fact of not breaking anything when doing anything," Allen said.
From changing a diaper to hitting a pothole, Cameron was prone to break a bone. Even something as simple as carrying him was a challenge -- bracing him on a hip wasn't an option. And of course learning to walk came with its own set of bumps and breaks.
When Becky would bring Cameron to the hospital in his car seat, other patients would ask why that infant had a cast on his leg. And Becky would have to explain osteogenesis imperfecta.
But Cameron grew up, and he kept on going -- defying the doctors who said he has little chance at a normal life, or any life.
He even beat the odds when he broke 20 bones after falling down a flight of stairs.
Once again doctors told the Hopes their son wasn't going to make it -- and once again, he proved them wrong.
There have been other challenges -- walking for one. Rodding solved that obstacle.
Across both of Cameron's knees are parallel scars -- evidence of the procedure used to strengthen his leg bones. Rods are inserted into the bones and act as an internal splint. Bones can still fracture, but lengthy casting isn't required.
And Cameron also has a secret weapon.
Dr. Carl St. Remy, an orthopedic surgeon and specialist in Virginia, has been a great help to Cameron, often working on his holidays and days off whenever Cameron has a serious fracture or break.
"He's the closest thing to God on Earth. He's just like an angel reincarnated in human form," Allen said.
The family has also helped ease Cameron's medicine intake by installing a port.
Located on Cameron's left pectoral muscle, a port, or a medical opening under the skin, provides better access to the circulatory system. Standard intravenous therapy would most likely break his arm.
Cameron's primary treatment is taken every three months, which he calls his "strong medicine." Last taken in April, the medicine strengthens Cameron's bones and raises his energy levels visibly. By June, Cameron will become more fragile and start to suffer arthritis in the mornings, a challenge he will have to deal with for the rest of his life.
There is no cure for osteogenesis imperfecta -- something that that, Allen said, stems partially from a lack of awareness.
Unlike cancer, AIDS or autism, which have huge foundations, tag lines and events devoted to raising money to find a cure, OI has been relegated to the disease fundraising sidelines, mostly because the number of people who suffer from it is much smaller and far fewer people know about it. It is estimated that 25,000 to 50,000 Americans are afflicted with the disease.
That lack of awareness also can lead to problems for sufferers and family members including authorities who mistake the disease's consequences as child abuse.
Also, many aspects of a patient's care require specialists.
"Unless you have family members with it, people aren't really aware," Allen said. "Cameron looks like a normal boy. You wouldn't know he had OI with a passing glance."
Eventually, Cameron will have to be in surgery for the 11th time, this time to help combat against compression fractures in his back. But the family is looking to put that off until it has to be done.
Before that happens, Cameron has to go on a foray to Disneyland, thanks in part to the Make-A-Wish Foundation -- a wish made with his family and sisters in mind.
"He's very much a go-getter," Becky said.
As Cameron grows older, Allen said he'll still worry about his son getting hurt easily. But age does have it positives as fractures and breaks decrease with experience.
"They pretty much learn, 'Do I really want to do this? -- because if I do, I may break an arm or a leg or a rib, or if it's dangerous enough, maybe a skull fracture.' They have to be very judgmental in what they do," Allen said.
As for Cameron, he'll keep on doing what he does best -- getting back up after being broken.
"I just want everybody to become aware and understand what they go through. I don't want to say the pain, but that's what it is," Allen said.
"It just is an adventure and not always a pleasant one."