May 23, 2024
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May 23, 2024
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Linking Northern and Central NJ, Bronx, Manhattan, Westchester and CT

The Annual ALS Walk: Walking in Memory of Eitan Jacobi

Eitan Jacobi could name all 44 US Presidents in order.

If you’d try to stump the Teaneck youth on a presidential trivia question, you didn’t stand much of a chance.

When Eitan was 11, he told his parents, Rabbi Lori Forman-Jacobi and Simcha Jacobi, that he was having difficulty throwing a basketball. It wasn’t such a big deal at the time. But then he couldn’t lift his arms high enough to put oatmeal into the microwave oven.

Eitan, his parents and sister Lori would soon learn the cruel diagnosis. Eitan had a juvenile form of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. He died on the 27th day of Sivan, or June 25 last year. He was 12 1/2 when he died. On Sunday, May 31, beginning at 10:30 a.m., Team Eitan, a group of his family members and about 60 friends and supporters will participate in the 5K ALS Walk at Saddlebrook River Parkway. The event’s purpose is to raise funds for ALS research.

“Doing this just weeks before his first yartzheit is meaningful in many ways,” said his mother.

“He was our second child,” she continued. “He was a loving, warm, very friendly and outgoing child. He came to us (in September, 2013) and said he couldn’t throw a basketball. I didn’t know what that meant. We didn’t make much of it. But then there were other incidents.”

The family started by taking Eitan to his pediatrician. Quickly Eitan was losing his ability to button his shirt. His upper chest area was weakening and quickly so.

“There was no explanation for it,” Forman-Jacobi said. “To tell you the truth, no one knew. Nobody I can tell you has seen juvenile ALS, because the cases are so few. Eitan was taken to Johns Hopkins Hospital in Baltimore, the Mayo Clinic in Minnesota and Maimonides Medical Center. We went to see the top physicians in neuromuscular disorders.

“He couldn’t walk,” she said. “This is a genetic mutation with few cases documented. For the youngest victims, it is a rapid-fire, severe decline. In September he couldn’t throw a basketball. He couldn’t move by Memorial Day.

“As parents we don’t expect this to happen to a child,” she continued. “It’s difficult when you can’t help your child and you can’t access treatment. To hear a doctor say there is no treatment. You hear yourself saying `what do you mean there’s no treatment?’ The progression is so quick and severe, there’s no time to set up clinical trials.”

Forman-Jacobi added “The saddest thing in the world is to watch your child lose his body. The speech goes at the end. During this time, we had incredible support from Teaneck’s Congregation Beth Sholom. Congregants visited Eitan, and they sent in countless meals. Eitan was into presidential trivia, and we used his interest to keep his mind going. We’d ask trivia questions. He became the trivia king.”

Eitan requested a meeting with a President through the Make-A-Wish Foundation. His visitor was former President Bill Clinton, who came to the family’s Teaneck home.

“He was so gracious,” said Forman-Jacobi. “He spent like 50 minutes and we played presidential trivia with him.” Eitan was even able to stump Clinton when he asked him who was the first president born in a hospital? The answer, Eitan’s mom said: Jimmy Carter. Eitan was also visited by impersonators of Abe Lincoln, John Adams and Thomas Jefferson. The entire neighborhood would visit when the “presidents” arrived.

Is she angry at God for her son’s death?

“Look, there are no answers,” she said. “We have no answers. “We want to support all the scientific efforts researching this disease. It’s a cruel disease. Your mind stays with you as your body stops functioning. We never will know why this happened, but we miss him and love him every single day. This was heartbreaking and life changing. There is no why.

“Nobody wants to bury their child.”

To learn more about Team Eitan, visit webgny.alsa.org/goto/teamEitan.

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