When their daughter Lindsay Zuckerman was born in 2003 with Type I Gaucher Disease — an affliction that disproportionately affects one in 450 Ashkenazi Jews — her parents, Michelle and Evan Zuckerman of Towaco, were assured by the National Gaucher Foundation that there was treatment available.
But many of Lindsay’s 12 years have been filled with difficulty. The buildup of fatty substances in her organs, including the spleen and liver, can lead to anemia, easy bruising and bleeding, severe bone pain, and fragile bones.
From the time she was two, Lindsay was monitored by geneticists and doctors. Because she has a small growth at the base of her spine, “they said she would never be a superstar athlete,” Michelle Zuckerman told NJ Jewish News in a Jan. 29 phone interview.
At age six, she said, Lindsay began having pains at the base of her joints. She began enzyme replacement therapy in October 2014. Though it took a while for the treatments to take effect — when she was in sixth grade, said Zuckerman, she had “a very rough year, including broken bones in her left arm” — but now the infusions are working, and “Lindsay is living a fairly normal, happy, productive life. The enzyme treatments she receives at home every other week are a normal part of her routine.”
Now a seventh-grader at Robert Lazar Middle School in Montville, Lindsay “is an amazing kid with a great, spunky personality who loves music, dance, and theater,” said Zuckerman.
Lindsay, whose bat mitzva is set for September at Pine Brook Jewish Center in Montville, was determined that her mitzva project would combine her interests with her concern for fellow Gaucher sufferers.
She decided to hold a dance-athon to benefit the National Gaucher Foundation on Jan. 31 in the synagogue’s social hall, charging admission on a sliding scale of $18 to $1,000.
On a leaflet advertising the event, she explained her motivation. “I am 12 years old and I have Type 1 Gaucher disease,” she wrote. “I have struggled with much pain over the years but I am able to live a pretty normal life because of the enzyme replacement therapy infusions I receive every other week. The work of the National Gaucher Foundation is very important to my life and I hope you will help sponsor this event and come dance with me,” she wrote.
Her hopes were more than realized.
“We had an amazing turnout. We drew several hundred people and raised more than $15,000,” said Zuckerman the morning after the dance party. “Lindsay had set $10,000 as her goal. She was just thrilled that so much more was raised, and we are still counting the money we raised on-line.”
JK Productions, which will provide music for Lindsay’s bat mitzva celebration, donated its services for the dance party, and dozens of local businesses in the Montville area contributed food, beverages, and door prizes free of charge.
In addition to raising funds for the foundation through the dance-athon, Lindsay also wants to raise awareness and let people know that many have suffered unnecessarily because they aren’t aware of the effective therapy, said her mother. “Part of her desire is to get the word out that treatment is available.”
Lindsay is also producing an informational DVD for young people with Gaucher “to show that you can get through the treatments and it is not so bad,” Zuckerman said.
“I’d give anything not to have Lindsay suffer and go through all the things she has gone through, but she has a great life now,” she added. “I wish for her a long, happy, fulfilling, productive life with college, a happy marriage, and her own kids when the time comes.”