A man well known in local communities for his contributions to the arts has been suffering from a progressive illness for many years, and his wife is now struggling with a recent terminal disease diagnosis.
Charles Schneider was the founding music director of the Glimmerglass Opera, and conductor of symphonies in Utica, Oneonta and Schenectady.
He suffers from idiopathic pulmonary fibrosis (IPF), a disease that causes scarring of the lungs. The scar tissue builds up over time, and lung function begins to deteriorate.
Charles told his children in November that his IPF has progressed significantly, and may not have much time left.
At that time, Charles’ wife, Rayna, also revealed to their three children that she was recently diagnosed with Lou Gehrig's Disease, or ALS, after suffering with speech issues for several months. Rayna has a rare form of ALS, called bulbar onset. According to the children, she also suffers with paralyzed vocal cords, significant weight loss and severe swallowing and choking problems.
The couple’s children -- Dana Schneider, Megan Schneider-Ajakh, and Paul Baker – have set up a GoFundMe to help offset the cost of caring for their parents.
The children shared their concerns on the GoFundMe page, saying “The thought of having two terminally ill parents, whose diseases both require extensive care, and neither of whom is employed, has taken awhile to comprehend and sort out, and has caused a wide range of emotions for all of our family.”
The post also says, “The funds will be spent strictly on in-home skilled nursing care, home health care during their final months, assistive devices (ramp, motorized cart, etc.), ongoing prescription costs, etc.”
More than $17,000 was donated to the GoFundMe as of Friday morning.