Fallon Mirsky’s life hangs in the balance

It is difficult under the circumstances she lives her life, but Fallon Mirsky is trying very hard to maintain a positive outlook despite the fact her 30-year-old body is ravaged by Reflex sympathetic dystrophy.

The Hewlett High School alumna and Valley Stream resident was diagnosed with the rare and life-threatening disease in May 2001 that was almost unheard before then.

Mirsky lives on a regimen of pills that attempts to balance the problems with a body that feels like an engine racing out of control. It is believed that the disease is caused by an abnormal chain reaction in the sympathetic nervous system, which regulates blood flow and other aspects of the skin.

“I try to keep a positive outlook on everything, but it is really, really hard,” Mirsky said. “I really want to get better. I am not giving up so easily. My life hangs in the balance.”

In not surrendering to her medical condition, Mirsky maintains hope that medical treatments can save her. This summer she is expected to travel to California, then Florida for treatments. Mirsky is looking to undergo a more intensive ketamine coma than she receives in New York.

Ketamine is a powerful anesthetic that is approved by the federal Food and Drug Administration. Physicians compare the induced comas to turning off a computer, and then the body doesn’t feel any pain. When the body’s computer, the brain, is turned on again and the patient is brought out of the coma, the pain system is “rebooted.”

With her esophagus swollen, Mirsky has substantial difficulty swallowing and therefore eating. In addition, her kidneys are beginning to fail. “Everything that is minor becomes major thing,” she said. Mirsky is expected to be put in ketamine comas over the course of five days in Florida instead of the usual three or four days due to the fragility of her body. There is a possibility of going to Santo Domingo, where higher than FDA permitted levels of ketamine can be used.

In May her body weight was listed as 75 pounds and her medical condition ranges from dry eyes and dry skin to aching muscles or joints, the inability to stand temperature changes, bloating, indigestion and severe headaches. “I would have to consider her the severest case I have ever encountered,” said Dr. David Roberstson, a Tennessee-based physician, who performed testing on Mirsky several years ago.

Her father, Perry Mirsky, helps lift his daughter to and from her many medical appointments and ketamine treatments. When she undergoes the more intensive comas, he will be there to monitor her condition. “Something’s got to be done, it’s always getting worse,” he said about Mirsky’s condition. “This has taken a tremendous toll.” Especially financially as Mirsky’s treatments, which are considered experimental and not covered by insurance, cost thousands of dollars

Mirsky said that the pain has gotten so bad that most days she just lays around and cries. She especially misses her grandmother, Rae Mirsky, who died in March. “Before I had my grandmother and we took care of each other,” Mirsky said. “We have a family joke: We don’t get bad news, we just don’t get good news.”

For more on Fallon Mirsky and to help with a donation visit her website http://gofundme.com/FallonMirsky?r=54672