Mom Slammed by Hurricane Sandy, Then ALS Diagnosis

Devorah Schochet needs help to make damaged home handicapped-accessible.

May 1, 2013— -- 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."

Last July, Schochet began to notice other strange symptoms. She had difficulty walking in her high heels and the fine motor skills in her hands were weakening. Her finger began to curl, but she ignored it.

In October, Schochet was at home looking for work when Hurricane Sandy struck. She had put her children to sleep on a sofa bed in the basement, fearing falling trees.

"About 11:30, I heard a huge crash and it smelled absolutely awful," said Schochet. "Water was coming in everywhere. I had never seen anything like it in my life. I grabbed the kids and whatever I could save and put down towels. Nothing worked. The water was rising and rising."

Rescue workers arrived in wet suits and scuba gear and extricated the family from the house in two shifts. The Schochets spent part of the night at the firehouse and the rest at a Red Cross shelter.

The family lived out of suitcases for a month with friends and family, then moved into a rental home with a long commute to the children's school. Sabrina had another corrective surgery and a six-week recovery period.

By January, the family moved back home where the basement and foundation were "a complete mess." All the utilities were lost and the insurance company paid to replace the boiler. Heat on one side of the house was still not working as they awaited a gas line from the national grid.

"When they finally installed our heat, they cut the line to the air conditioning," she said. "We are having trouble getting the guys back to install our AC before it gets too hot."

Their insurance company, Allstate, denied the claim for foundation work because of a sinkhole, which wasn't covered under the policy, according to Schochet.

"But the sinkhole isn't a real sinkhole -- it was caused by running water," she said. "It isn't structural and the ground is stable. ... The company isn't playing fair."

April Eaton, corporate relations manager for Allstate, said the company had a "strong record" of responding to Hurricane Sandy claims of more than $718 million.

"We are handling this as fairly as we can, based on what we see," she said. "We are really working hard with people to do the right thing. I feel for this family and am frustrated for people going through Hurricane Sandy -- it's hard."

She said the Schochets have two policies with Allstate, a homeowner's one, in which all claims were paid, and flood insurance, which is strictly regulated by the National Flood Insurance Program. (NFIP)

"We only do what they tell us to do -- we are legally bound," she said of NFIP. "They have the policy language that we follow and a certified flood adjuster, based on what they see, reports back."

In the dispute over foundation damage and the sinkhole, Eaton said article 5, exclusions section C, stipulates that the flood policy will not insure earth movement, "even by flood."

"Because of that, the claim was denied," she said. "We are operating on behalf of NFIP and we have to follow these guidelines. … We've got to go by the rules. There is no wiggle room around this."

Meanwhile, Schochet's hands continued to weaken and, in February, her husband urged her to see a neuromuscular neurologist, who determined she had the same gene for ALS as her mother. She was put on medication, but told there was no cure.

One doctor told her she would only live two to four years more. Another told her ALS diagnoses were variable.

"I liked that one better," she said.

Before even looking at house renovations to accommodate her illness, the Schochets estimated repairs to the existing house will cost $150,000.

Their homeowner's policy paid for wind damage to the siding, electric work and a fence.

The flood policy with the company replaced the boiler, but not foundation and concrete damage, an old oil tank removal and repairs from the house shifting.

"There are so many programs that do this," Schochet said of television reality shows. "We have to get their attention now. We could save our money and get permits the regular way but that could take years, and I don't have years."

Still, she is optimistic: "I just see things can be miserable or I can go on with life."