Jessica Stevens, 23, suffered in her hospital room from horrendous pain and open lesions on arms, legs and torso. Her prognosis was bleak; a lifetime of neurological malfunction and searing pain. Her malady resulted from the tiniest of creatures; a bite received in summer camp from a tick infected with Lyme disease triggering Reflex Sympathetic Dystrophy.
“The pain all over my body was like I was being burned on a hot stove,” Stevens said March 9 during a fundraising luncheon held in her honor at Marco Lutheran Church. “I couldn’t stand someone touching me. Changes in temperature sent me screaming in pain. Light and sound were so magnified, I had to wear dark glasses and earphones to dampen sound.”
“Jessica’s Journey,” to the dark side of the disease and to the faith that sustained her, brought emotional tears to those watching a video of her story. A young girl, wracked with pain and shaking uncontrollably, lay dying on the screen before them. No cure and no medical treatment in the U.S. could help her.
That’s when Stevens’ parents decided to try what some would have thought unthinkable. They transported their daughter to Central America for a totally experimental protocol. In Monterrey, Mexico, doctors placed Stevens in a ketamine-induced coma, a treatment not approved by the U.S. Food and Drug Administration.
In studies abroad, doctors found that ketamine comas can shut the body down to such an extent that the brain and nervous system have an opportunity to reset themselves.
“The brain is like a computer,” Stevens explained, “When it has a virus, the computer has to be shut down and reset before it will function properly again.”
Her first induced comma lasted eight days and produced hopeful results, but Stevens struggled for an additional two-and-a-half years before she was well enough to travel back to the U.S. Her video documented that time as each setback was endured, and each small step toward recovery was celebrated in joy and faith.
Despite her debilitations, Stevens appeared smiling and confident throughout the video. Her recovery was powered by faith and the caring people of many cultures who surrounded her. There were moments to smile with her joy, understand her fears, and feel her pain.
Stevens painted the color of darkness as her trial to be endured; often referring to the mountains around Monterrey as her inspiration. Although she has returned home to Naples, her recovery is not complete. The dystrophy that gripped her is not cured, but is under control. It could be triggered again by an unknown stimulus, she said.
Attendees at the fundraisers were treated to a jewelry fashion show by Jewels by Park Lane. Local businesses and groups also raised funds during the event including the Marco Island Corvette and Muscle Car Club.
Stevens wants to campaign to have her treatment approved in the U.S. She will make a presentation at an international pain conference in Washington, D.C., in October. She also will appear before government groups advocating her treatment be made available for other sufferers in the U.S.
“Her grandmother has been telling me about this story for a while,” said Deborah Spalvins of Marco Island’s Curves, one of the businesses raising funds for Stevens.
“I was really inspired by this,” Spalvins said. “Coming here I learned how much her journey represented hope and how much can be accomplished when people come together.”
The fundraiser helped Stevens’ family pay for the tremendous cost of medical care not covered by insurance due to the treatment’s experimental nature. Learn more about Jessica’s Journey online at www.hopeforjessica.blogspot.com. Additional donations can be made online at Jessica’s Journey Savings Club, http://bit.ly or by mail payable to Jessica’s Journey Savings Club, 14505 Indigo Lakes Blvd., Naples, FL 34119.