Over the past year, Byrum Bittel has dropped 50 to 75 pounds. He’s lost strength in his arms, and routine tasks have become more difficult.
But he’s hoping an upcoming operation will help turn things around.
The 15-year-old Spearville boy suffers from Duchenne muscular dystrophy, a genetic disorder that affects about 1 in 3,500 boys around the world. People with DMD experience progressive loss of muscle function and weakness, starting in their lower limbs and spreading to the arms, neck and other areas.
Few people with DMD live past their 30s, and breathing complications and cardiomyopathy — an enlarged heart — are common causes of death, accoring to the National Human Genome Research Institute. Byrum’s family knows there is no cure for the disease, but they are praying his upcoming surgery will buy him a few more years.
The family learned recently that Byrum is eligible for a stem-cell transplant, an experimental treatment aimed at stopping the progress of his disease. The treatment will begin Jan. 31 at the Stem Cell Institute in Panama City, Panama.
Byrum’s mother, Amanda Bittel, acknowledged that the transplant may not succeed in stopping the disease. But she said she’s keeping her fingers crossed.
“There’s risk there,” she said in an interview Friday. “But considering there’s no other cure for Duchenne, we’re willing to take that risk.”
The first clue that Byrum had DMD came when he was only 8 months old.
Byrum had been in and out of the hospital with croup and pneumonia, and his lab work showed his liver enzymes were higher than normal — which might have indicated a liver disease.
Byrum’s local doctor wanted to send him to a specialist in Denver. But before the family drove to Denver, the doctor checked Byrum’s muscles and heart, which indicated that he had muscular dystrophy.
But the family did not know whether Byrum had Duchenne or Becker’s muscular dystrophy — a less common and slower-moving form of the disease.
A muscle biopsy when Byrum was 3 years old revealed the truth: He was suffering from DMD.
“It was devastating,” Amanda Bittel said.
Byrum’s doctors thought he would be confined to a wheelchair by the time he reached third grade, but he managed to defy the odds for two more years. He started using a wheelchair when he was in fifth grade and eventually progressed from a manual wheelchair to an electric one, which he uses today.
Despite the wheelchair, Byrum tries to stay active and optimistic. A paraprofessional helps him during the school day, and he does stretching and swimming exercises to keep his muscles limber.
Byrum’s stepfather, Scheon Elledge, said it’s important to remember that Byrum is still a child and deserves a normal childhood.
“I don’t look at Byrum as being much different than a typical teenager,” Scheon said. “He still doesn’t like to do his homework, but you’ve still got to make him do his homework. He likes playing video games, he likes — typical things that teenagers like. It’s just, he has to have the chair.”
He said the family includes Byrum in every activity, whether it’s a trip out of town or a night at the races.
“We’ve taken him to Worlds of Fun, we’ve taken him to Disney World, we take him to the lake,” Scheon said. “It may be a little more work, but he goes.”