Lieutenant Governor of Kiwanis Queens West Division J.P. Di Troia hosted members from the Forest Hills, Middle Village, Maspeth, Glendale, Howard Beach, Richmond Hill, Woodhaven, East River, Staten Island and Seneca divisions of Kiwanis at the Fresh Pond Crematory last Wednesday, where the group raised over $2,000 for the cause.
Pediatric Lyme disease was brought to the Kiwanis agenda back in 2000, when then-New York District Governor John Gridley made helping children with the disease a top priority.
The Pediatric Lyme Disease Foundation was then set up for Kiwanis divisions around New York to raise money to pay for medical treatment for children with the disease, which is expensive and often not covered by insurance.
In the 14 years that he has been advocating and raising money, Gridley, who attended Wednesday night’s event, said the Pediatric Lyme Disease Foundation has paid $269,000 for medical treatments.
In that time, he has also seen two children die from the disease, which he described as causing a “life of agony” for the children diagnosed with it.
“If we don’t help these children, who’s going to help them?” Gridley asked at the fundraiser. “I’m not going to let another child die from this disease.”
Marion Conway, a local resident who suffers from chronic Lyme disease, was supposed to be in attendance, but could not make it due to medical issues associated with the disease.
Instead, she sent a letter that was read aloud at the event, in which she described how she was bitten by a tick when she was eight months pregnant. Though she had symptoms and continued to get sicker over time, her doctor told her for two years that it was “all in her head.”
“I still remember the day I stood in our kitchen with our two sons, holding a pizza, and asking our five-year-old what to do with it,” Conway wrote.
At that point, she and her family knew that this was not something she was making up, and they went to a different doctor, who tested and treated her for neurologic Lyme disease. It took six weeks of intravenous treatment for her to get “my life back, not the life I had before the tick bite, but a life.”
It has now been 27 years since that first diagnosis, but unfortunately Conway got bit again a few years ago. This time she only went six months without getting properly diagnosed.
“Please don't ever let any doctor tell you that your child is faking an illness, trying to get attention or just doesn't want to go to school,” Conway warned. “Lyme is a serious and complicated disease, and a disease that no child should ever, ever have to experience.”
Di Troia said that he was still receiving checks from members who could not make it Wednesday night.
“We have a very good division,” he said. “People came out in the cold weather, and even those who couldn’t make it are still sending me money.”
He estimated that when all was said and done, the event will have raised between $2,300 and $2,500 for the Pediatric Lyme Disease Foundation.
A highlight of the evening was a performance by the Family Residences and Essential Enterprises (FREE) Jazz Ensemble, made up of a group of talented singers with special needs who have performed in venues from Citi Field to Queens College and all over the tri-state area.
The group received a standing ovation at the fundraiser, and the ensemble’s director, Bridget Livingston, said she hopes to continue a working relationship with Kiwanis.
Livingston, an accomplished and world-traveled singer herself, said she started the group four years ago to help the young people at FREE — located in Long Island — follow their artistic passions.
“I just want them to experience some of the things that I’ve experienced, like being able to go abroad,” Livingston said. “It’s just being able to do your passion. They love to sing, I love to sing.”
And, she said, she advocates for people with special needs because she believes that everyone has something to contribute to “one unified community.”
“We don’t want them to be excluded because of the fact that they’ve been diagnosed or labeled,” she said. “Take away the label and respect the fact that we’re all people.”