At 4 years old, Ozzie Benda has already changed the way his family looks at the future.
Ozzie was diagnosed earlier this year with Sanfilippo syndrome Type A, an extremely rare and progressive neurodegenerative disease. His mother, Antoinette Benda, said the diagnosis introduced her family to a disease they had never even heard of.
“Before Ozzie was diagnosed, our family had never heard of Sanfilippo. Most people haven’t,” Benda said. “We are trying to change that.”
The Benda family has deep roots in Palos Heights, dating back to the 1950s, through Davia and Benda Inc. Mason Contractors, who was part of the community for many years, helping build homes and other parts of Palos Heights as the area grew.
Today, the family still lives in Palos Heights. Ozzie’s 7-year-old sister, Aria, attends Palos East Elementary School.
Ozzie’s diagnosis has brought a new focus to the family as they work to learn about Sanfilippo while also educating others.
Sanfilippo syndrome can cause children to gradually lose skills they have already developed. The disease can affect communication, cognition, independence and mobility. There is currently no approved cure.
“Since his diagnosis, our family has been working to raise awareness, advocate for children with rare diseases, connect with organizations and community leaders, and create meaningful experiences for Ozzie while he is still able to fully participate in and enjoy them,” Benda said.
That has become especially important to the family.
Ozzie is still a 4-year-old boy who has time with his sister, his parents and the people who have known and loved the Benda family for years. His family wants to give him opportunities to enjoy childhood and spend time with the people closest to him.
At the same time, they are learning what it means to live with a rare disease that few people know about.
Benda said the family hopes sharing Ozzie’s story will help other families who may eventually face a similar diagnosis.
“I thought Ozzie’s story might be especially meaningful to others because this is a local family facing an incredibly rare diagnosis while trying to turn it into something positive for the community and for other families who may someday find themselves in the same position,” she said.
World Sanfilippo Awareness Day is Nov. 16. The Bendas hope Palos Heights and communities throughout the southwest suburbs will become part of their effort to raise awareness.
Their goal is to get people talking about Sanfilippo.
Ozzie’s family wants more people to know what the disease is, understand what families affected by it are going through and learn about the need for research and treatment.
“We are trying to change that,” Benda said.
