He has spent 15 years in the wine business, but now Gary Landsman is putting his family first.
With two chronically ill sons, Landsman is shuttering Taste Wine Company, 50 Third Ave., this week, but the store will likely reopen soon under new management.
“My decision to walk away was one of the toughest decisions I’ve ever had to make in my life,” Landsman said. “At the end of the day there’s nothing more important than family.”
Landsman of Marine Park, Brooklyn, has owned Taste Wine in the East Village since 2015, but a few weeks ago told the community he was closing.
While the announcement stunned the neighborhood, everyone soon understood why. Landsman and his wife Jennie have two children, Benny, 4, and Josh, 3, who suffer from Canavan disease, a genetic brain disorder. Without intervention, the boys will never sit, crawl, walk or speak. They will eventually develop seizures, lose their eyesight, require feeding tubes and possibly die by early adolescence.
The couple also have a third son, Evan, 1, who does not have Canavan.
According to Landsman, life has not been easy. While they have professional assistance for the boys, he spends many days and hours at the business and he and Jennie have a lot on their plate.
“My wife has really carried a lot of the burden of running the household,” he explained.
Search for a Cure
They got married a few months before Landsman opened the store and about a year later Benny was born. The signs were not noticeable at first and it wasn’t until he was 13 months old that they saw what was wrong.
When doctors said that nothing could be done for the boys, they went on a desperate search for a cure and found neuroscientist, Dr. Paola Leone, director of Cell and Gene Therapy Center at Rowan University’s School of Osteopathic Medicine.
On July 31, 2017, Leone diagnosed both kids with Canavan. Landsman and Jennie were depressed at first, but a support group helped.
Leone’s work in gene therapy focuses on penetrating cells directly affected by Canavan. She agreed to help, but private funding would be needed. They discovered insurance and pharmaceutical companies do not cover the costs of the experimental procedures.
After numerous conversations with Leone, the FDA and other doctors, it was determined they needed to raise $6.2 million. So in 2017, they launched a GoFundMe, which has amassed $4.6 million so far and 9,000 contributors.
“We decided we were going to do this and we were going to ask the public to help save our kids,” Landsman said. “We raised a truly miraculous amount of money.”
However, they are still in a bind. The Landsmans need to raise approximately $1.2 million more, $650,000 of which is due in 14 days and the remaining $560,000 ($280,000 each, for Benny and Josh) due shortly thereafter to cover the neurosurgery and hospitalization costs.
"Time for Treatment"
Once all of that is settled, the family will relocate to Dayton, Ohio, for two months where the boys will each have a procedure at Dayton Children’s Hospital. Landsman explained it was supposed to take place in 2018 and 2019 and now hopes it finally happens.
“We’ve seen several massive delays, but now we’re in 2020,” he commented. “It’s time for treatment for the boys, so it’s time to move on from the store.”
Over the past five years he has become an integral part of the East Village. It pains him to leave, but he knows it’s the right choice.
His customers have become friends and many are sad to see him go. A few months ago the landlord put a “retail space available” sign up and people began to ask what was going on. Then last week Landsman penned a heartfelt letter about the dire situation on the outside of the store.
“I love wine and cherish the relationships I’ve had with my customers,” he remarked. “Really what it came down to was we are days away from the payment deadline and weeks away we hope from the surgery.”
While there is no guarantee it will work, he can only pray and hope.
“When a man is on his death bed he never says I wish I would have worked more,” Landsman said. “My goal is to spend more time with my family. We hope that this is going to be the cure.”