When Cindy was pregnant with her son during the early months of COVID-19, she felt him moving much earlier than expected. “He was zipping all over the place,” she remembers with a smile. That’s when she lovingly nicknamed him Zippy—a name that has followed him ever since. But during an ultrasound, doctors noticed abnormalities, and soon after Zippy was diagnosed with Arthrogryposis Multiplex Congenita (AMC), a group of disorders characterized by stiff joints fixed in one position at birth.
Cindy and her family learned that Zippy had Amyoplasia, the most common form of AMC,with no known genetic link. The news came with a devastating warning that 20 to 30 percent of live births with this diagnosis don’t survive. Doctors urged the family to decide quickly whether to continue the pregnancy. Cindy didn’t hesitate. She wrapped her arms around her belly and said no. “He was already ours,” she recalls.
When Zippy was born, his condition did not affect his major organs like his heart or lungs, which Cindy calls “an incredible blessing.” Still, his joints were stiff, and therapy began just eight hours after birth. The early years were focused on gaining range of motion, because every time he hit a growth spurt, his muscles tried to contract again. It was a constant process of stretching and opening. Through it all, Zippy’s spirit remained strong, and with the support of a dedicated healthcare team, he has made incredible progress. Now four years old and in pre-K, he is thriving, full of energy, laughter, and imagination.
Even with his progress, simple tasks like drawing or holding a crayon were exhausting for Zippy. He couldn’t press hard enough to make marks on paper, and trying to hold on was so difficult that he often used his mouth instead. That changed when Cindy’s best friend came across Guided Hands® on Instagram. “She sent me a post and said, ‘I think this could really help him,’” Cindy remembers. Her friend didn’t stop there. She rallied her community and organized a small fundraising campaign through her social network and local teachers. Their generosity made it possible for Zippy to get his own device.
Cindy will never forget the first time her son tried Guided Hands®, just after his third birthday. “Once he realized he could scribble and draw, he lit up. He wanted to go through all our paper, making thank-you notes for everyone who donated. It was like a light switch turned on. For the first time, he was making marks with his hand instead of his mouth.” The joy and independence that moment brought to Zippy and his family were life-changing.
Since then, Guided Hands® has become an essential part of Zippy’s daily life at both home and school. Cindy explains that he doesn’t tire out as easily and his posture has improved. He can complete tasks more quickly because, as she puts it, “he can think, hold, and do at the same time.” The device has also helped him practice smaller, more precise movements, improving both his fine motor skills and his range of motion. His confidence has grown too. He now loves drawing and colouring, especially pictures of ghosts, which are his favourite all year round, not just at Halloween. And perhaps one of the biggest changes is how it has allowed him to communicate and participate while working. “Before, when he held a utensil in his mouth, he couldn’t talk while he worked. Now he can join in conversations and feel included,” Cindy says.
The impact has extended beyond their home. When Zippy’s school saw how much the device was helping him, they found a way to provide one for his classroom as well. “We don’t know who made it possible, but we are immensely grateful,” Cindy shares. Even Zippy’s sister loves using Guided Hands®, which Cindy says is proof of how fun and empowering it can be.
Cindy says that watching her son discover new ways to learn and create has been one of the greatest joys of her life. “Watching Zippy draw, write, and keep up with his classmates fills me with so much gratitude. Guided Hands has given him independence and confidence. It allows him to just be a kid.”
