Blue Sky to hold Tay-Sachs benefit concert

By Gus Bode

Wine, music and the chance to help cure a fatal disease will combine at the Blue Sky Vineyard Saturday.

The vineyard will host the third annual benefit concert for Tay-Sachs, a fatal genetic disorder in which one out of 250 people worldwide are carriers. Children with Tay-Sachs usually die by age four and no treatment currently exists for the disease.

The benefit, held from 10 a.m. to 8 p.m. in Makanda, will include a silent auction and live music throughout the day, with all proceeds going to national Tay-Sachs foundations for treatment research.

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According to the National Institute of Neurological Disorders and Stroke, Tay-Sachs is a fatal genetic disorder where nerve cells become swollen with fatty material after the first few months of life. The disease causes a deterioration of mental and physical abilities, eventually leaving the child blind, deaf, paralyzed and unable to swallow.

Fern Talmar, a Blue Sky employee, said the benefit began in honor of Elise Rochman, the granddaughter of Blue Sky Vineyard’s owner Barrett Rochman.

Three-year-old Elise was diagnosed with Tay-Sachs at 11 months, said her father, Tim Rochman.

Rochman, who stays home full time to care for his daughter, said Elise had been progressing normally for the first six months of her life. Around seven months, she began to have trouble reaching the normal milestones of a child’s development, he said.

“I was always thinking she’ll catch up because people would say, you know, they would give you their past experience that babies learn at different times,” he said.

Rochman said one of the hardest things he had to do was tell his wife, Karri, that their daughter had a fatal genetic disorder. After that it becomes about how to deal with it, he said.

Barrett Rochman said each benefit held has brought in more money than the last, helping to fund research for the mysterious disease. It wasn’t until several years ago that the gene causing Tay-Sachs was identified, Barrett Rochman said, but now there are tests that can identify it in the womb.

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Until then it was an absolute death sentence, he said, with no hope, no reason, no way to understand why. Doing things now will help in the future, Barrett Rochman said.

“You have to have hope,” Barrett Rochman said. “The hope is now in place because they’re researching a cure.”

Talmar said the benefit would feature eight bands, food from local businesses, a silent auction and a visit from several Southern Illinois Miners baseball players. There are items up for bid ranging from Cardinals tickets to a week in Hawaii, Talmar said. Admission is $7 for adults and free for children 15 and under.

Madeleine Leroux can be reached at 536-3311 ext. 268 or [email protected].

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