By A.M. Kelley
Superior Catholic Herald
Treatment for rare disease brings huge medical bills
SUPERIOR -- Mary Sutton's treatment for a rare nervous system disorder cost $32,000. She lives in Florida and the only doctors who perform the experimental procedure are in Mexico or Germany. She has been unable to work for a year because of the disabling effects of her illness: reflex sympathetic dystrophy syndrome, in which misfiring nerves send constant pain signals to the brain. Sutton, 33, is a single parent with a 7-year-old daughter. Needless to say she is desperate for help.
Her parents, Tom and Ethel Dzikonski, former parishioners of St. Anthony in Superior, and her aunt Josephine Brady, its current sacristan, and other family members borrowed all the money they could to pay the doctor's bill.
Now St. Anthony's parishioners are gearing up to help the family pay off this debt by having a spaghetti feed and raffle. The fundraiser will take place on Jan. 26 from 4-7 p.m. at the church.
Sutton's treatment and recovery is delicate issue. According to Brady, after research and communication by phone and by e-mail with others suffering with the same disorder who left the United States for the same treatment, Sutton's parents took her to a hospital in Monterrey, Mexico on Jan. 2. On Jan. 5 she was put into a ketamine-induced coma. This drug, an anesthetic, will continue to be administered to Sutton for about five days. During that time she will remain unconscious. When the drug is stopped Sutton can expect a difficult withdrawal and hallucinations. But when she returns to consciousness, the hope is that the time in the coma will have allowed the link between the pain sensory neurons and the brain to be reset. In others words, Sutton could be pain-free -- for how long no one knows. Some get relief for days and then find that more ketamine treatments are needed at lesser doses. For some, the disabling pain abates and they return to a normal life.
It's a state of mind and body Sutton will welcome, Brady said. Her niece has endured crippling pain for more than a year when the symptoms and the subsequent search for a diagnosis began.
"It took a long time to get the diagnosis," Brady said. "There aren't a lot of doctors trained in this disease."
Many times, RSD is triggered by an obvious injury, something as simple as a broken bone, but Sutton had no identified nerve injuries, a fact which complicated her diagnosis.
"She would go (to a doctor) and complain of pain," Brady said. "(The doctor) gave her pain medication. When that didn't help, they gave her stronger medication. They accused her of it being all in her head. Doctors kept saying, 'it's got to help,' but it didn't help."
In fact, she said, the medication made the pain worse.
Sutton had been the assistant manager for a children's clothing store in Florida before the onset of her misery. She lost that job as the constant pain spread through her body causing uncontrollable shaking and eventually the need for a wheelchair. She's been unable to work since.
While Sutton and her parents are in Mexico, Brady is in Florida caring for Sutton's daughter, Elizabeth.
"She's doing pretty good," Brady said. "I try to keep her busy."
The family's loans and the ongoing cost of Sutton's care when she returns home are, and will be, difficult for the family to shoulder. Brady, 67, is retired, as are Sutton's parents. Before moving to Florida, Tom Dzikonski was a butcher at the former Red Owl grocery store on Belknap Street and Ethel worked as a secretary at Holden Insurance Agency and also for the University of Wisconsin-Superior. Besides Mary, the couple has two sons, Michael and Patrick who also live in Florida. The Dzikonski children all attended Superior Senior High School.
In addition to the spaghetti fundraiser, an account in Mary Sutton's name has been set up at Superior Bank, 2820 E. 2nd St., Superior, WI 54880. The bank's phone number is 715-398-3551.
© Superior Catholic Herald, 2008