A rare disease afflicts a 10-year-old boy in Colorado, Jaiden Rodgers. It is a genetic disorder, and only 40 cases have ever been reported. Three years ago, Jaiden’s parents noticed spots on his skin that were getting hard to the touch. They were lesions with increased fibrotic tissue. His parents took him to numerous health professionals, but the doctors had trouble diagnosing the disease. Finally, Dr. Elizabeth Swanson identified it as stiff skin syndrome.
Treatment can stop it from spreading, but the treatment is still experimental. The National Institutes of Health says treatment has not been proven. At this time, chemotherapy drugs are slowing the progression of Jaiden’s illness. Dr. Swanson says that future sufferers of stiff skin syndrome will have a treatment that can stop the disease immediately. Once skin has turned to a stony lesion, it is damaged and it can’t be revitalized or reversed.
After three years, the rocky lesions have continued to spread throughout Jaiden’s back and legs until they nearly cover his body, and the disease causes him a lot of pain. He is now on oxygen, and he is confined to a wheelchair because he can no longer walk or attend school. Physical therapy is accomplished in an enclosed pool, which was donated by neighbors.
Henry Davidson has been the senior editor at American Magazine since 2018. A two-decade veteran of journalism, Henry’s work has appeared in the NPR, Examiner, The Sun and numerous other publications. He is a member of the United Media Guild.