Connecticut Girl Fights Rare Neurological Disease
The pain Mary Remotti feels when her body is touched by the even the softest bed sheet or as she lies motionless on her bed washes over her like the heat of an intense fire. Her eyes water as she endures a constant burning, tingling pain, which she cannot escape.
Remotti is an 18-year-old Connecticut girl who has spent the last two years of her life confined to her bed suffering from Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome (CRPS). The disease is severely debilitating, and Remotti has experienced some of the disease's worst symptoms including paralysis, intense muscle spasms, swelling and discoloration of her limbs, and chronic sharp burning pain.
Just before the debilitating symptoms of RSD began to plague Remotti in 2005, she was actively involved in the Fire Department Explorers, taking care of horses, and attending a vocational agricultural high school. She was looking forward to getting her driver's license, attending college and becoming a Certified Firefighter I. Then in September of 2005, she woke one morning unable to move her right leg and was in severe pain. A short time later she lost the ability to move her left leg. Since then, she has been unable to walk and recently lost use of her arms. She has been hospitalized frequently, prescribed more than 100 medications, and subjected to a multitude of invasive treatments, yet nothing has helped her condition.
In August 2007, Remotti was rushed to the hospital for "seizure-like activity" and was admitted to the intensive care unit at Hartford Hospital for two weeks. It was determined that she was experiencing severe convulsions or spasms associated with RSD. Once in stable condition, Remotti was discharged and flown to Florida to receive consultation from Dr. Anthony Kirkpatrick, a leading international RSD researcher.
Kirkpatrick determined the only course of treatment available to treat RSD as severe as Remotti's is Ketamine Coma Therapy, a clinical trial procedure being conducted in Monterrey, Mexico. The treatment would place Remotti in a coma for seven days and her brain will essentially "reset" itself and trigger her nervous system to send appropriate signals to her brain.
"Scary is knowing that I'm never going to walk again," Remotti explained. "I would rather try the coma therapy than live with this pain."
There are risks associated with the trial treatment, but many patients like Remotti who have severe RSD have had success. Remotti's immediate family supports her decision to pursue the Ketamine Coma Therapy. Transportation to and from Mexico and the treatment itself are out-of-pocket expenses for the Remotti family as their insurance does not cover medical expenses associated with this treatment. They must raise $200,000 to fund their daughter's treatment.
Remotti hopes to begin the Ketamine Coma Therapy treatment by mid-November. She has stated that her only wishes are to be free of the fiery pain and to be able to move again, resuming life where she left off two years ago.