Variety is one piece of the puzzle helping families afford essential healthcare support
Nicolas is a bright and curious teen who loves sports, music, and video games. “He’s super funny. Once he feels comfortable, he’s relatively outgoing,” his mom Petra says. “He’s very smart, knows stuff about everything. He does a lot of research and comes to us with facts I never knew about.”
He just started Grade 8 at his local high school this fall, where he’s in a self-directed program that offers him a balance of support and trying things on his own. “He’s trying to become more independent,” Petra says. “There are times when he’s like, ‘I don’t need an EA. I can just hang out with my friends or get set up and work away.’”
Nicolas has spinal muscular atrophy, a genetic condition that affects the nerves controlling muscles, making it harder to move, stay strong, and maintain muscle function. Therapies and adaptive supports play a crucial role in his daily life.
Hydrotherapy has been a key part of his care for years. Having muscular atrophy means his mobility is normally quite limited—unless he’s swimming. “Nicolas has been swimming most of his life,” Petra says. “In the water he’s more free, he’s able to move. So it’s super important for his muscles—to keep him as flexible and mobile as possible.”
During a house renovation, Nicolas’s parents had an indoor pool installed for him. Having a physiotherapist visit their home makes therapy sessions even more accessible. “With hydrotherapy, he’s able to maintain more of his movement and strength. If he wasn’t doing it, he would be losing a lot of function a lot quicker,” Petra says.
Yet the costs of adaptive equipment and therapies are overwhelming. “Everything is so expensive. His power chair alone was about $55,000. Variety is usually the first organization we hear back from when we send out funding applications. It’s very quick, efficient, and that’s something we really appreciate.”
Nicolas’s family has relied on Variety grants throughout his life to help them afford expensive equipment and therapy, including a van conversion, power wheelchair, standing frame, and therapy sessions. Few families can cover these kinds of expenses, meaning tough calls about which kinds of support they’re able to say yes to. Variety fills these gaps, so kids can access crucial care that improves their health and everyday life.
“We wouldn’t have been able to do it without help. It’s been huge for Nicholas,” Petra says.