LE MARS, Iowa | Lakota Kading fastens the Velcro on his elbow brace before taking the baseball field, not knowing whether he will be able to play the sport, let alone still have his left forearm, next summer.
The 11-year-old, from Marcus, Iowa, couldn't go out for wrestling this school year. He had to give up playing football to sit on the sidelines as team manager. He is missing horse shows and hours spent swimming and riding his bike this summer.
"I can't really do anything right now," Lakota said as he sat on the steps of his grandmother Margaret Koerner's home on a balmy Tuesday afternoon. His arms were crossed and his head lowered.
"I just hurt," he said. "I can't play with my friends."
A few months ago, Lakota was diagnosed with Hegemann's disease, a rare degenerative condition that affects his elbow joint. He is one of only eight children in the United States known to have the vascular disorder, said his mother, Teresa Van Voorst.
Boys ages 7 to 15 are mostly affected by this condition that causes swelling and pain in the joint and limits range of motion, according to the Journal of Children's Orthopaedics.
Lakota's left elbow was originally impacted, but now he also experiences pain in his ankles and jaw. He is flying with his mom to Cincinnati Children's Hospital on Sunday in search of answers.
Van Voorst hopes specialists there, who are working with two other children with Hegemann's disease, can save her son's arm from amputation.
Before the diagnosis, Lakota, who takes pain medication three times a day, was an active kid who loved to play sports, ride horses and mow his grandmother's lawn.
"There's nothing holding that elbow. The two bones just float," Van Voorst said. "He tries to show that it doesn't hurt, but he does. When he starts hurting, that's when we kind of slow down."
In fact, Van Voorst is keeping her children's bikes in storage because Lakota can't ride. Daughters Anna Kaye Kading, 13, and Jersey Van Voorst, 8, won't be out on two wheels this year. Their mother didn't want Lakota to feel left out.
"If he can't ride 'em then we shouldn't be able to because he really can barely do anything that we can do," said Jersey, who tries to cheer up her brother when he's feeling down.
Four years ago when a dog ran in front of him, Lakota fell off his bike and shattered his elbow.
"His bone was out. It wasn't through the skin, but we knew something was wrong," Van Voorst said.
She put Lakota in the truck and drove him to the emergency room. He underwent surgery in Le Mars to repair his elbow, but then his body rejected the surgical pins. Two more operations followed that year.
Long after Lakota's surgical scars had healed, the pain in his arm lingered.
Then he started complaining of pain in his ankles and jaw as well. Van Voorst chalked it up to growing pains. She bought new insoles for his shoes and sent him to a chiropractor for adjustments, but nothing seemed to alleviate her son's pain.
"We kept telling him it would go away. It didn't," she said.
Lakota's radial head -- the top of his radius bone just below his elbow -- popped out while he was playing football last year and then four months ago it came out of place again while he was playing basketball at school.
His arm was immobilized for two weeks. A follow-up MRI finally revealed the source of his pain: aseptic osteonecrosis of the humeral trochlea, or Hegemann's disease. Reduced blood flow to the bones in Lakota's joints causes his bone to break down faster than his body can make enough new bone.
Van Voorst said her son has had the disease since birth, but it went undetected until his most recent injury. She said there are no physicians in Siouxland who can manage his condition, which will require joint replacement.
"It was a very long process," Van Voorst said of the road to a diagnosis. "Even when you look it up on the Internet you really do not find any reports on this disease. It attacks every joint and stops the bones from growing. He's losing muscle and nerve in his arm."
Although he can't play a full game of baseball, Lakota is still suiting up and playing outfield for Marcus-Meriden-Cleghorn. He bats with one arm.
Van Voorst said her son doesn't want other children to treat him any differently because of Hegemann's disease.
"I don't know what's going to happen," Lakota said with a shrug.
In the meantime, he's trying to cope with a very scary and uncertain situation. His first trip to Cincinnati likely will be one of many more to come.