Special Spaces—Creating dream rooms for children with life-threatening illnesses

October 2014 View more

Kelly Knox, Chicagoland Chapter Director of Special Spaces

Kelly Knox, Chicagoland Chapter Director of Special Spaces

For many children, preschool is about learning ABCs, counting to 10, and transforming macaroni into works of art. But for two-year-old Ella Casten, who had witnessed older siblings attend school, she concluded that preschool must be where children finally learn how to walk. However, when Ella, a child with a terminal neuromuscular disease, learned that she would not be learning to walk in preschool, she was devastated.

Dina Esposito, a counselor at Jane Addams Middle School, met Ella two years ago at her daughter’s birthday party. Captivated by the tiny tot, a blonde-haired child with big brown eyes seated in the smallest wheelchair she had ever seen, Esposito asked Ella’s mother about the her story. During that conversation, Esposito learned about Spinal Muscular Atrophy Type 2, about Ella’s disappointment concerning preschool, and their recent move to Naperville to better accommodate their daughter’s many medical needs.

Esposito wanted to help. After she heard about Special Spaces, a nonprofit organization that creates dream bedrooms for children with life-threatening medical illnesses, she wrote to the Chicagoland chapter about Ella’s condition. “She has recently become aware that she will never walk and there is no cure,” Esposito explained in her letter. “Her family has worked hard to meet Ella’s everyday needs. Is there a way to nominate this amazing little girl to get a dream room of her own?”

The answer was a resounding yes. On June 3, Special Spaces completed their first makeover in Naperville for Ella, who is now four years old, thanks to the many volunteers who gave of their time and to a sponsorship by Continental Motors of Naperville. “Joel Weinberger and his team—they were amazing,” said Kelly Knox, Special Spaces local director based in Naperville. “Our sponsors are always amazing, but about Joel in particular, I cannot say enough. He made such a difference in Ella’s life.”

Although Special Spaces has been helping children around the country since 2004, the Chicagoland chapter started in February of 2013. Since then, it has already given 25 critically ill children bedroom makeovers, and is starting up two more chapters in Lake Zurich and Tinley Park.

“Our mission is to change one child’s life, one bedroom at a time. We have tried hard not to say no in Chicago to those we screen,” says Knox. “We are blessed to receive children with the full gamut of conditions. We have five strong children’s hospitals in our area and we work with them all—we’ve had them come as far away as Wisconsin.” Special Spaces is currently booked through February 2015 in an effort to help as many children as possible.

Such commitment is not surprising. Knox quit her drapery workshop business to combine her creative talent with her love of helping others and now volunteers full-time as a director for Special Spaces. Knox and her core team regularly welcome volunteers to help make the dreams of critically ill children a reality. However, corporate sponsorships are critical. Companies are invaluable, not only in covering the $3,000 cost for each project, but also for supplying many of the hands-on volunteers.

In a process that takes six to eight weeks to plan, the makeover culminates in a single workday when a team of volunteers descends on a family’s home and transforms the child’s bedroom with a climactic “reveal” that same evening. For Ella’s family, it was certainly a dream come true.

For more information about Special Spaces and how you or your company can volunteer, visit www.specialspaceschicagoland.org.