Teen with bone condition seeks treatment funding

MOSES LAKE — Shane Blackman is just 16 years old, but his bones tell a different story.

The Moses Lake teen suffers from a mysterious arthritic condition causing his joints to freeze in place.

His left elbow is locked at an angle, and so is his right wrist.

“We’ve been able to see the process happening, and while it’s happening,” said Physical Therapist Alan Badgley.

Shane’s family said his joints started locking up around a year ago. He was evaluated for rheumatoid arthritis at Seattle Children’s Hospital and Shriner’s Hospital in Spokane. The diagnosis from both facilities was negative.

Doctors say Shane has an osteoarthritis, but the condition is one typically afflicting older adults, said dad, Dan Blackman.

“Now, we’re trying to get a diagnosis that’s going to help him,” Dan said.

The family hopes to travel to the University of California, Los Angeles, to seek specialized care. To do so, they are raising money through a benefit account in Shane’s name at Key Bank. Anyone in the community can contribute to the fund.

Fund-raising events are also in the planning stages.

Mom Shannaue Blackman noted some forms of arthritis can attack the organs. She hopes the physician at UCLA can find a way to slow down the progression of Shane’s condition.

“We’re trying to generate money to go down there and hopefully get a diagnosis that will stop his decline,” Dan said.

The estimated cost of treatment is $22,000, but the actual cost is unknown until the family arrives at the university, Dan said.

Shane hopes the doctors at UCLA can find a treatment for him.

“Finding something, just anything, something to help,” Shane said.

When a joint is about to lock up, it first starts to pop, Shane explained. Then, he experiences extreme pain. The ability to move the joint is slowly lost.

When the joint freezes in place, the pain subsides.

All-over muscle weakness is another symptom Shane is experiencing.

“They say it’s abnormal but they don’t know what (it) is,” Shannaue said.

Arthritis is just one obstacle Shane has dealt with in life.

Shane was born nine weeks early in 1993, weighing 2 pounds, 15 ounces.

He had a congenital heart defect in the form of a hole in his heart. At first, the hole seemed to grow as Shane grew bigger. But the hole stopped growing, giving the family the benefit of avoiding surgery.

There was another problem in Shane’s development, though. As a toddler, Shane could not sit up on his own. And when his parents tried to sit him up, his legs turned purple.

The family learned Shane’s spinal cord was twisted. A surgery straightened it out.

“He learned to walk in a full body cast before he learned to walk,” said Shannaue.

The surgery caused nerve damage and Shane underwent further treatment to have his heel cords extended.

Shane is so used to feeling pain every day, he doesn’t like using pain medication.

“When you take the pain away, it’s weird,” Shane said. “It does not feel right.”

He said doctors ask him to describe his pain level on a scale of one to 10, and he is unable to provide an answer.

To help with his condition, Shane takes physical therapy with Badgley twice a week, alternating between land and water therapy.

“I’ve never seen anything like this,” said Badgley, who started treating Shane three years ago.

He said he has seen osteoarthritis and rheumatoid arthritis patients, but he has never seen a condition where the joints freeze so quickly.

“He puts up with a lot because he’s in a lot of pain and he doesn’t let on,” Badgley said.

When Shane started therapy, his main issues were balance and strength, Badgley said. Shane’s strength has improved, and he uses a cane, which helps with balance.

But the elbow and wrist joints worsened, Badgley said.

Badgley now knows the stretching of Shane’s ailing joints couldn’t stop the progression.

Except for the mysterious condition Shane is suffering, he seems to be a normal teen. Shane spends his time on school work, designing video games and eating. He is also close to getting his driver’s license.

How to help

Donations can be made at any Key Bank branch, to the benefit account of Shane Blackman.

Any left over money will be donated to an organization benefiting children in the area, according to the Blackman family.