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Wife raises funds for rare disease

Wife raises funds for rare disease

Wife raises funds for rare disease

Peters resident Kathy Esposito said her late husband was one in a million. Bobby Esposito was a kind soul with strong family values and a fun-loving nature, she said.

Today, the rest of the world knows how rare he was, too, but maybe not for those heart-felt reasons.

Mr. Esposito -- nicknamed "Espo" -- died at age 47 on Sept. 23, 2012, from Creutzfeldt-Jakob disease, a rapidly progressive, fatal neurodegenerative brain disorder that affects only one in a million people each year worldwide. In the United States, there are about 200 cases of CJD per year, according to the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health. There is no cure.

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The type of CJD that Mr. Esposito had is called "sporadic," said Mrs. Esposito, 53, who works as director of operations at Alorica Inc. in West Mifflin. It's the most common form of the disease and its cause is unknown.

"He was such a healthy, vibrant person. Then, all of a sudden, this tornado comes into his life and plays havoc in a matter of weeks," she said.

To honor a promise to her husband to help doctors find a cure for the disease, Mrs. Esposito is hosting a fundraiser, with proceeds earmarked for research through the CJD Foundation in New York City. Espo's Night of Hope for CJD will be from 6:30 to 11:30 p.m. Saturday at the Georgetown Centre, 526 East Bruceton Road, Pleasant Hills. Lori Nusbaum, associate director of the CJD Foundation, will speak. Tickets are $35 and include a buffet, auctions and entertainment. Reservations are required. Details: www.esposhope.com or esposhope@comcast.net.

The goal is to raise $20,000, but if at least $10,000 is raised, the CJD Foundation will contribute $30,000 toward a research grant in her husband's name, Mrs. Esposito said.

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She recalled that the first indication of a health problem began over the Fourth of July weekend in 2012. Her husband complained of eye strain. Employed as a lead treasury representative at the Federal Reserve Bank of Cleveland in Pittsburgh, he thought long hours of computer work were to blame. An eye doctor said his eyes were fine.

Problems with balance and coordination followed, but the tests that an ear specialist ran for a suspected middle ear infection came back negative. Soon her husband was unable to even hold a fork at mealtime, shuffled when he walked and had to hold onto walls to keep from falling.

A series of neurological tests at Jefferson Regional Medical Center and UPMC Presbyterian all came back negative. The specialists were at first puzzled.

She recalled that on one particularly pain-filled day at Jefferson Hospital, her husband told her: "Pray to St. Jude and ask that he give doctors the wisdom to find an antidote for the disease."

She promised she would.

Diagnosis of CJD is very difficult, according to the neurological institute, and can only be confirmed through a brain biopsy or autopsy. However, testing cerebral spinal fluid for the presence of a protein that indicates extensive destruction of brain tissue and testing for elevated levels of what is called a tau protein count, is often used to confirm a possible diagnosis.

Mr. Esposito tested positive for both, Mrs. Esposito said.

"By making people aware of the disease and helping to keep the research going, I'm keeping my promise to Bobby," she said.

For more information: www.cjdfoundation.org.

Kathy Samudovsky, freelance writer: suburbanliving@post-gazette.com.

First Published: October 24, 2013, 10:10 a.m.

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