Rachel Gross started at the Henry Viscardi School when she was 3 years old.
After being diagnosed with nemaline rod myopathy, a form of muscular dystrophy that affects approximately 50,000 people worldwide, when she was 1 year old, Gross said she always knew she was different but didn’t know why.
“I remember playing with other children in our apartment building, and I was never treated any differently, but I knew I was not able to do all the things other kids did,” Gross said. “When I first visited Viscardi, I was amazed to see so many people like me. People at Viscardi weren’t running on their feet; they were speeding down the halls in their motorized wheelchairs like me! I knew right away this was the place I wanted to be and this was where I belonged.”
Gross served as the keynote speaker Tuesday afternoon at the 36th annual Reach for a Star luncheon at Crest Hollow Country Club in Woodbury to support the Viscardi Center and its school.
During the luncheon, Broadway actor Kara Lindsay, known for her roles in “Newsies,” “Wicked” and “Beautiful,” performed for the crowd of about 500 attendees.
Gross, now a Hofstra University student, said her school was just like every other school with its cliques and stressors but credits the extracurricular activities as its shining star.
In third grade, Gross joined the Cubbies, the elementary school’s wheelchair basketball team, and moved to the high school team, the Cougars, in seventh grade.
“Being a part of the team with the guidance of Joe Slaninka and the other coaches instilled in me a sense of pride and teamwork,” Gross said. “When I was in 10th grade, I received the Bubba award, given to a player that exemplifies not only great skills but also great sportsmanship.”
Gross also spent three weekends at the school’s on-site independent living house, which is fully accessible, Viscardi Center President and CEO John D. Kemp said.
“Thanks to your generosity, the house will have at least one extra day and night that our students can learn how to live independently,” Kemp said. “Right now, it’s Friday nights for five or six at a time and their aides, but we’re adding a Thursday night so they have to go to bed on a school night, get up on a Friday morning, get themselves ready and get across the street with their homework.”
Kemp said the center was also working toward implementing a new Bridge program for students who have aged out of the schools but are not going to college, which will help them build life skills such as accessing public transportation, taking classes and learning “how to live a real life more and more independently,” Kemp said.
Gross said she also participated in the school’s Friday night recreation nights once a month, giving the students extra time out of the classroom to socialize.
“This program is so important to the students of Viscardi because we all live so far from each other, and since distance and accessible transportation options are limited, we would otherwise rarely ever get to see our friends outside of school,” Gross said.
Now a college student, Gross said she lives on campus and enjoys the newfound freedom that terrified her as a freshman new to the Hempstead campus. Gross is set to graduate in December after four and a half years at Hofstra with a bachelor’s degree in public relations with a minor in civic engagement.
“I no longer had my parents by my side,” Gross said of her early college experiences. “I no longer had someone to advocate for me in the moment. I no longer had teachers reminding me when assignments were due. I was on my own, and I had to learn to get by on my own.”
Gross and her family, including her two brothers Sam and Jack, have gotten a lot of attention in the past few years but she said the extra attention isn’t warranted for her regular family.
“Over the years, we have gotten many comments about how inspirational our family is, and while we do appreciate these comments, it also takes us by surprise because we don’t see or consider ourselves any different from other families,” Gross said. “My parents have never treated me any different than my brothers. My brothers and I even have that typical sibling rivalry.”
