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“...this makes you feel like you have a family around you that loves your son as much as you do.”

When asked to describe her son Nicholas, Donna Lesniak starts with the basics.  He’s eight years old, loves being around other kids, and adores Thomas the Tank Engine.  But then she throws in one last tidbit about her son that really paints a vivid picture of him: “He is the most courageous, bravest little boy I have ever met in my whole life.”

Years ago, Nicholas was diagnosed with Battens Disease, a condition which affects his mobility and can cause frequent seizures.  As a toddler, the easiest way for Nicky’s parents, Donna and Rob, to spend time with him was to set up foam mats on the floor and lay down beside him to cuddle, play and provide personal care.  However, as Nicky grew up, it became less safe to transfer him to and from the foam pads, and another solution needed to be found.

“We didn’t want him to be stuck in a hospital bed in a separate room,” Donna explains. 

It wasn’t until the Lesniaks met with experts at Motion Specialties that they found out about the CareFoam chair—a special chaise-lounge with sides that would allow Nicky to lie down safely, permit his parents to provide his care, and fit nicely in the living room to continue the family’s tradition of spending time together.  It was almost a perfect solution, except for one detail.

“It’s very expensive,” sighs Donna.  “There’s no way we would have been able to afford it on our own.”

Luckily, the Independent Living Centre of Waterloo Region was able to offer help through its Tournament of Hope Golf Classic, which just celebrated its 15th Anniversary of helping families just like the Lesniaks.  After receiving funds raised by the local Kiwanis Club, the CareFoam chair was almost within reach—but it was the Tournament of Hope funding that brought the chair to the Lesniaks’ door.

“We were amazed,” Donna says candidly.  “It just fills my heart that so many people out there would give their time and money to help my son.  As a parent of a child with special needs, you think a lot of the time that you’re alone—this makes you feel like you have a family around you that loves your son as much as you do.”

        Now, Nicky spends lots of time in safety and comfort in his CareFoam chair—something Donna and Rob appreciate immensely. “I can’t say ‘thank you’ enough times,” Donna says.  “This chair is going to mean better quality and longer life for him.  It really does change your life.”

        The Tournament of Hope has raised $318,000 to help purchase assistive devices just like Nicky’s chair for over 119 individuals in our community.  It’s just one of the ways we help people with disabilities to live independently in our community!



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