‘I try to be as normal as possible’

Fallon Mirsky is dying.

But the Hewlett High School alumna — a once-vibrant young woman who played the violin, was a competitive figure skater and excelled academically — is not surrendering to her medical condition.

Mirsky, who graduated from HHS nearly 12 years ago, was diagnosed in May 2001 with a rare and life-threatening disease that was almost unheard of until then. Reflex sympathetic dystrophy turned her existence into a living hell. She weighs just 60 pounds and is in constant pain. Her limbs, which are swollen, sometimes feeling like they are on fire, and are sometimes freezing cold. She is unable to sweat.

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. “Experts liken the pain response to that of an engine revving out of control,” Mirsky wrote on her blog.

For her weekly therapy, which seeks to reset her body’s pain connections and repair the sympathetic nervous system, she must be sedated into a coma-like state, and after she is awakened, she is carried by her father, Perry Mirsky, from the treatment center to the car and then back into the house, where she takes about 50 pills a day.

“I try to be as normal as possible, but I can’t shower, can’t sleep with a blanket,” said Fallon, a Valley Stream resident who will turn 30 this month. It took her 10 years to earn a bachelor’s degree from Hofstra University, and because of her condition, she passed out during her May 2011 graduation ceremony.

But despite the odds against her, Mirsky is not giving up. She has set up a website, http://gofundme.com/FallonMirsky?r=54672

— where she asks for donations to help pay for the treatments she needs, which cost thousands of dollars. Considered experimental, the treatments are not covered by health insurance, according to her father Perry. She requires more ketamine, a powerful anesthetic, than what is approved by the federal Food and Drug Administration.