Englewood boy’s rare illness featured on Monsters Inside Me

Almost 30 members of the extended families of Englewood residents Javan and Rebecca Conley watched Animal Planet’s “Monsters Inside Me” on bigscreen TVs at Company 7 BBQrecently.

The mood was intense during the episode featuring the Conley’s middle child, 11-year-old Ethan, as he battled enzymes that had multiplied throughout his body and shut down his kidneys.

Now a sixth-grader at Northmoor Elementary School, Ethan was in third grade when his strange odyssey began.

“From his first symptoms, I thought he had food poisoning, then it went to flu-like symptoms,” said his mother, Rebecca. “He lay around for three days, then had such pain in his legs that we took him to Children’s Medical Center.”

Tests on Ethan showed that he had an extremely high count of the CPK enzyme – 100,000 times what’s considered normal. His diagnosis was Viral Myositis with Rhabdomyolysis, a virus that attaches itself to muscle tissue and multiplies quickly, breaking down the tissue. Doctors thought he would lose a leg, if not his life, since the dying tissue releases toxins.

“The toxins shut down his kidneys and he was on dialysis from day three in Childrens Medical Center’s Pediatric Intensive Care Unit until day 24,” said Conley. “This virus usually attacks the lungs – his was a rare case and he’s the only person in the world to survive the levels of CPK he had in his body.

“They could only give him supportive care. Then, one day the levels started coming down; the virus was finished attacking, CPK levels came down daily, and he went from 24-hour dialysis to several times a day until his kidneys started functioning again.”

Ethan was in the hospital for 33 days.

After a celebration at Vandalia Christian Tabernacle covered by local media, the Animal Planet Network called to ask the family to be on their “Monsters Inside Me.” The network recorded 26 hours of footage at the hospital and the family’s home over two days in 2011.

After viewing Ethan’s episode, Conley observed that the show captured the medical part, but she was disappointed that it “left out our faith in God and all the prayers and support we received that we believed helped.”

“But Ethan was thrilled with the show, especially when he returned to school the next day and many of his classmates – even the boys – said that they cried when they watched it,” Conley said.

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