Fishers teen battles tansverse myelitis
By Anna Skinner
A little more than a year ago, Treyvon Summer woke in the middle of the night with extreme pain and began to lose mobility of his legs Then his lungs slowed down. After what doctors originally believed was internalized anxiety, the Fishers family discovered the 13-year-old was suffering from transverse myelitis. Within hours, he was paralyzed from the neck down.
“It was a miracle that his cognitive ability wasn’t impacted and his breathing was able to be restored,” said Maranda Summer, Treyvon’s mother. “It was four weeks before he could move anything. Near the end of the fourth week, his right arm muscle started twitching and he could move a couple more muscles.
“He was transported to a rehabilitation institute in Chicago and was an inpatient there for 12 weeks. He got a little more motor skill use in his upper body.”
Transverse myelitis is a rare neuroimmune disease. The Summer family never discovered why Treyvon contracted it. One third of patients recover fully, one third recover partly and one third never recover. Maranda is confident he will make a full recovery and someday walk again.
“We think he has a lot further to go and a lot of strengthening he needs to do,” Maranda said. “We researched this like crazy, reached out to other people that have it. We also have the challenge is our family is more minded in natural medicine whenever possible. Our biggest spike through it is doctors with medicine.”
The family recently spent time at the Kennedy Krieger Institute, which works closely with John Hopkins. It uses electrical stimulation and is more adept at treating the disease than other hospitals the family has visited.
For more, visit ninds.nih.gov.