Bizarre disease leads to agonizing life or death decision for teen
Courtny Gerrish, Stephanie Graham
Melissa McCrady reportsPhoto: Video by tmj4.com
NAPLES, FL - At age 16, Jessica Stevens of Florida was the picture of a happy, healthy teenager. But all that changed with a tiny tick bite on the back of her knee.
What first appeared as a rash, turned into a crippling condition.
"Once I got the Lyme disease, it invaded, my nervous system. I lost use of both of my legs," Jessica recalls.
A light, a breeze, a whisper caused excruciating pain. Sunglasses and headphones did little to help.
"I couldn't get out of the bed, I couldn't eat, I couldn't move. Every single thing in my life was pain, any type of lights or sound triggered a seizure," Jessica says.
Jessica was diagnosed with a rare, incurable neurological condition considered the most painful known to medicine. Reflex Sympathetic Dystrophy or RSD, causes nerves to malfunction--constantly sending pain signals to the brain, which responds by releasing powerful chemicals that burn unbearably painful sores into the skin. Her arms and abdomen were covered. "You feel like you're doused in gasoline, lit on fire and burned continuously."
Not even a mother's touch. Jessica's mom Sarah was beside herself.
"The child always comes to mom first, mommy can always make it better, mommy fixes the boo, boo. But with this illness, there's really nothing you can do you can't even touch them," Sarah says.
Desperate for answers, the family took Jessica to more than 100 doctors. Some suggested amputating her arms. Others said it was time to let her die. Jessica would eventually make the same request of her mother.
Jessica recalls, "I was on a heart machine, being fed through a feeding tube... and I asked her please just shut it, I can't do another second.... She said no I'm not God, I can't decide when that time is for you, as long as there is life in you there is hope and we're going to keep fighting.
That fight took them to the RSD treatment center in Tampa, where Dr. Anthony Kirkpatrick suggested Jessica's last hope for survival was to become part of a research study in Monterrey, Mexico. There, Dr. Fernando Cantu would attempt a drastic, experimental procedure not approved in the United States. Jessica would be put into a coma using an anesthetic and hallucinogenic drug, called Ketamine. They would pump more of it into her body than an American hospital uses in an entire year. Like re-booting a computer, the coma would aim to re-start the brain... but there was no guarantee.
"We were told she would probably die there in Mexico," Sarah recalls.
Jessica spent seven days in an induced coma - nearly three times as long is allowed in the U.S.
"I woke up and my lesions had vanished," Jessica says.
But serious complications followed.
"I didn't know who I was. I had complete amnesia. I didn't recognize my mother. My whole life was wiped out from that coma," Jessica says.
The nightmare didn't stop there. Jessica lost her eyesight. What was expected to be only a few months of treatment in Mexico, turned into years. She nearly died several times.
"It was hell, it was the deepest suffering you can imagine," Jessica says.
Doctors tried again--this time using a different anesthetic drug to induce a coma. But the lesions and the pain remained. Jessica's health slipped into a freefall, her lungs collapsed. She was dying. To save her life, Dr. Cantu pumped Ketamine into Jessica, putting her into another coma - her third in two years. She was in critical condition--her battered brain and body were less likely than ever to survive. But death was not what she feared most.
"The worst thing to me would have been to go through it, wake up and still not have died and still be alive in the same constant pain that was in for all those years," Jessica says.
Jessica's mom recorded the first moments when Jessica came to. Sarah: "I love you Jessica." Jessica: "I love you too."
This time, it worked! Jessica woke up healed. She calls it the 'Miracle Coma.' Jessica was finally able to fly home after years of being away. The little sisters she left behind when her ordeal began are now young women.
Now 24 years old, she uses a wheelchair as she transitions from years of being bedridden far from home.
"It was psychological warfare, I feel like for six years, my mom and I were prisoners of war," Jessica says.
Now she has a message for others imprisoned by the terrifying condition. "Don't give up. There's light at the end of the tunnel, I promise you that.. and I'm living proof of that, because I shouldn't be here right now and I am."
Jessica's pushing for Ketamine coma procedure to be approved in the United States. R.S.D. is also known as Complex Regional Pain Syndrome. Click here for more information.