Fundraiser to raise awareness of rare disease
“It came out of nowhere.” That’s what Kathy Esposito of Venetia said of the disease that took her husband’s life one year ago.
That illness was Creutzfeldt-Jakob Disease. CJD is a rare and rapidly progressing neurodegenerative brain disorder. Patients in the early stages of the disease may exhibit failing memory, behavior changes, impaired coordination and or/visual disturbances. As the illness progresses, mental deterioration becomes more pronounced and involuntary movements, blindness, weakness of extremities and even coma may occur.
There are three types of CJD: familial, acquired and sporadic. Sporadic is the most common form; affecting 85 percent of CJD patients. Sporadic CJD usually occurs later in life and typically leads to death within a few weeks or months following the onset of symptoms.
In less than two months, Bobby Esposito, a fit 47-year-old surrendered to the illness. He had sporadic CJD.
According to the Centers for Disease Control, sporadic CJD is caused by the spontaneous transformation of normal prion proteins into abnormal ones. CJD occurs worldwide including in the United States at a rate of approximately one case per 1 million per year, according to the CDC. In the most recent five-year period, the United States has reported between 279 and 352 cases.
Bobby became one of those cases. In July 2012, Bobby began experiencing symptoms similar to a middle ear infection. However, that was ruled out because the symptoms progressed rapidly. Within seven weeks Bobby was dead.
“He was never sick a day in his life. He was very active and physically fit. He ate healthy and worked out,” Kathy said. “I thought, ‘Where did this come from?’”
She added, “I felt like I went from being on top of the world to being at rock bottom.”
Twelve years ago, Bobby became Kathy’s world. Bobby and Kathy met while they both worked for U.S. Airways. He was from Brookline; she from Castle Shannon. She told her best friend, Karen Sinopoli, ‘I’m going to marry that guy.’ And, she did with Sinopoli by her side as maid of honor. The Espositos were married for 12 years. They built their dream house on a few acres in Peters Township. “We were inseparable,” Kathy said. They traveled to exotic places like Aruba and Hawaii.
“He was, no doubt, the life of the party,” said an emotional Kathy. “He had a heart bigger than most people’s and his smile was contagious and he always found the good in people.”
Today, people will find the good in Bobby. On Oct. 26, Kathy and her friends, including Sinopoli are hosting a fundraising event in Bobby’s name. “Espo’s Night of Hope” begins at 6:30 p.m. at the Georgetown Centre in Pleasant Hills. Proceeds will go toward a research grant to help find a cause and cure for the disease. It is also to raise awareness about the sickness, because people, including Bobby, often don’t know they have the disease until they go through a battery of tests. By then they could be dead, as Bobby was shortly after his diagnosis.
“I feel like we lost so much control,” Kathy said.
While drinking his favorite mint chocolate milkshake Kathy assured Bobby he was going to be okay although he was being transferred to another hospital. “I told him, your dad’s going to ride in the ambulance with you and we’ll meet you there,” she said. By the time Bobby reached the hospital he had lost the ability to talk or communicate in any way.
“I never left his side. I stayed with him 24/7,” Kathy said. “It was very hard when he lost his ability to talk,” she added.
CJD is very hard to diagnose because the symptoms are similar to Alzheimer’s disease. In fact, Bobby was not diagnosed with the disease until after he was transferred to a large Pittsburgh-area hospital. Kathy said after several spinal taps and other tests including MRIs and screening for the 1433 protein, a physician from Johns-Hopkins University Medical Center reviewed of his MRIs. Right away the doctor recognized the disease. Bobby had what is called “cortical ribboning” in his brain, an indicator of CJD.
“The disease starts eating all of your brain cells,” Kathy said. “It is so unfair because it progresses so rapidly. I just don’t want anyone else going through it,” she said.
And that’s the primary reason Kathy and her friends organized the fundraiser.
Tickets are $35 and include a wine and cheese reception, dinner, dancing, entertainment and auctions. Reservations must be made by Oct. 5. Tickets can be purchased online at www.esposhope.webs.com.
Funds raised will go directly toward a research grant in Bobby’s name through the CJD Foundation. The mission of the CJD Foundation is based on serving the needs of the patients and families they represent. In 2006, the CJD established the Family and CJD Foundation Human Prion Disease Research Grant Project. Each grant is underwritten by both the CJD Foundation and a family affected by the disease and bears the name of the loved one being remembered.
What: Fundraiser for CJD
When: 6:30 p.m. Oct. 26
Where: Georgetowne Center, Pleasant Hills
Order tickets: www.esposhope.webs.com