'Isolated' Idaho Teen Can't Go Outside Because of His Rare Disease: 'He Is Lonely,' Says Mom
“It is a lifelong disease,” says Bryce Fisher's mother, Carolyn Anderson
A 13-year-old boy from Idaho isn’t able to go outside because of an extremely rare disease that affects only one in 1 million people.
According to the Autoinflammatory Alliance, children with the disorder develop deep aching pain, limping, tenderness over affected areas and often fevers.
Because of his compromised immune system, the seventh grader can’t socialize outside and isn’t able to see his friends — but the staff at his school are trying to help him from afar.
“He is lonely,” Anderson told the newspaper. “He feels isolated.”
Fisher’s family knew something was severely wrong when he crushed a vertebrae in his back while jumping on a trampoline. After a year of eliminating could have caused the injury, they formally diagnosed him a year-and-a-half ago. Since then, two more vertebrae have begun to collapse.
“It is a lifelong disease,” his mom told the newspaper, adding that the disease leads to other serious health complications including Crohn’s/colitis, asthma, SAPHO, arthritis and rheumatoid arthritis.
Some people with the disease need a wheelchair, but for now Fisher is able to walk — although he has a limp and moves slowly.
He goes through monthly infusions of strong medications in Seattle and on a recent Alaska Airlines flight he was allowed to sit in the co-pilot’s seat and wear the cap and jacket.
A YouCaring page has been set up to help with his medical and travel expenses. The teen also has treatments in Boise, which is additional travel for the family.
While they don’t know when his next infusion will be, they do know that pain medication only helps so much. They can only control his pain to a certain point because of the relationships to other medications he’s already on, according to his mother.
“There is not much else he can take,” she said.