Mom Slammed by Hurricane Sandy, Then ALS Diagnosis

PHOTO: Devorah Schochet, with her husband and children, has struggled to rebuild her storm-damaged home and now is dealing with a fatal ALS diagnosis.

Just six months ago, Hurricane Sandy slammed into Devorah Schochet's Long Island home, flooding the basement and crumbling the foundation. But in February, a grim diagnosis was even more destructive: She was told she had ALS and only a few years to live.

Now, the 39-year-old mother of four is battling not only her insurance company, but the quick physical decline that accompanies amyotrophic lateral sclerosis, often referred to as Lou Gehrig's disease. The progressive neurodegenerative disease causes the death of nerve cells in the brain and spinal cord, which control the muscles throughout the body.

Her mother died of ALS at the age of 59 but, at first, Schochet, who worked in finance before she lost her job, ignored some of the early warning signs -- stumbling in her high heels and a trembling voice.

"I was the executive who always wore heels and ran around the city in them," she told "Losing my persona by being unable to wear heels and command a performance by projecting my voice has been the hardest thing to grasp."

The Schochets have faced one tragedy after another since Sandy raged up the East Coast, causing billions of dollars worth of damage and leaving tens of thousands homeless. The entire foundation to their house washed away and left a massive sinkhole.

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"All the outside cracked with the force," she said. "The first floor buckled and every single joint cracked. Our immediate neighbor's house burned down when they found the power on."

In the aftermath of the storm, as the family was living in a small rental, her 13-year-old daughter Sabrina underwent major spinal surgery. Schochet's days were spent racing between the hospital, the rental and their damaged home to meet with insurance adjusters.

Schochet has gone public with her story on the fundraising website Root Funding, so that she can renovate her Woodmere, N.Y., home to make it handicapped-accessible.

Schochet worries about the future for her husband, a 44-year-old computer consultant, and her four children, ages 5 to 17.

"I need somebody -- a company or an organization -- to quickly build out the first floor to make a master bedroom and a bathroom and enlarge the kitchen," she said. "I have to have handicapped ramps inside the house.

"I have no idea how fast this disease is. But I am 99.9 percent sure that in the next 10 years, I will be on a [breathing] machine and in a wheelchair."

So far, the family has raised $83,000 through that site, in large part because of the efforts of her neighbor and friend, Sarah Hofstetter, who is president of the ad agency 360i.

Hofstetter and her colleagues volunteered their time to set up the fundraising and to reach out to media to raise awareness. They are hoping home renovation television shows might be able to help.

"It's crazy how she is holding it together," Hofstetter said of her friend.

Their daughters, now 13, have been friends since they were 3.

"Sabrina is strong like her mother," Hofstetter said.

"We were without power for two weeks, but what happened to her is unbelievable," said Hofstetter, 38. "A couple of weeks after her daughter came home from the hospital, she was diagnosed. There was literally nothing we could do to help her with her medical situation, but we could try to raise funds for her to repair her home or get her home prepared for her."

Schochet is chronicling her journey on her blog, Shirat Devorah. She said she is determined to do as much as she can for herself "until I can no longer."

"I have always been a proactive person, a take-charge person," said Schochet. "Friends have offered to go to the grocery store and make dinner. But I want to do it. I sound funny and I walk funny. Otherwise, I am fine."

Life has not been easy for the Schochets. Devorah Schochet struggled with infertility and conceived two of her children through in vitro fertilization. She lost her mother to an inheritable form of early-onset ALS.

When her daughter Sabrina was 8, doctors found a benign tumor on her spine and performed life-threatening surgery. Two years later, Schochet was laid off and has not been able to find full-time work since. About 18 months ago, she developed a speech impediment that was likely related to her ALS.

"I went to many doctors and none could figure out why," she said. "A year ago, I took a job at half my salary, and was laid off six months later because of my voice."

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