Determination and Resilience Amidst Chromosome 19 deletion syndrome
When he was only one year old, BCS@Home student Cadias Endrinal was diagnosed with a rare Chromosome 19 deletion syndrome. This disability delays his development in speech and physical capabilities, but his resilience in continuing to learn and grow with a creative and dedicated spirit is a testament to the diligence, love and encouragement of his family around him.
“When Cadias was six months old, we noticed he wasn’t holding his head up, so that’s when we first questioned what was going on,” his mother Roxanne explains. “When the doctors found that he had a deletion in Chromosome 19, we learned he was going to be delayed a lot of his life.”
Despite his initial delay with physical movement, help from physical therapy and family involvement gave him the resources and encouragement needed to develop his motor skills.
“We got amazing services through PACE kids, and they helped Cadias a lot with learning how to walk,” says Roxanne. “Now he’s almost 10 years old and can walk on his own, only needing ankle braces for occasional extra stability! With his progress in walking, we’ve moved on to focusing on speech development.”
Roxanne explains that, while his development in physical and speech abilities is delayed, he is incredibly dedicated to his education and progress. At nine years old, Cadias is technically in Grade 4, but many of his skills are closer to the Kindergarten levels. The recent switch to homeschooling allows them to hone in on his skills at the level and pace that fits his learning style.
“We knew he was really smart and keen on learning, but his body wasn’t catching up to where his brain was learning,” Roxanne explains. “We switched to homeschooling this year because of COVID-19, but it just opened my eyes to how much we can personalize his learning to focus on things according to his understanding of each subject.”
Homeschooling also gave them the opportunity to intersperse his academics with his at-home physio and speech therapy tasks. When Cadias was in school, he’d often have to leave during class time to attend physio and speech therapy lessons, which would put him even farther behind in school than where he was before. Now, school and therapy are rolled into one, which gives them more time to spend as a family throughout the day as well.
“We have three kids: a 13-year-old son named Tavian, nine-year-old Cadias, and then our newest addition, one-year-old Zariah,” says Roxanne. “Cadias loves playing Minecraft with his older brother, and playing hide-and-go-seek with his little sister Zariah. He’s really good with her, and loves to take care of her, always making sure she’s safe and careful.”
Cadias’s favourite subject is health, because he gets to do “Minecraft Yoga,” through Cosmic Kids on youtube. Cosmic Kids Yoga is a Youtube channel that incorporates yoga movements for kids with different themes, to get the kids interested and engaged while going through the motions and stretches for their bodies.
“When he’s not doing school or physio and speech therapy, he’s out playing soccer with his cousins, or Minecraft when it’s cold,” says Roxanne. “He also loves animals and dinosaurs, and has a collection of every dinosaur he can find.”
At the mention of dinosaurs, Cadias perks up and runs to the toy shelves to show off all of his dinosaur and animal toys. When asked where he wants to work one day, he exclaims, “Africa!” because there are so many animals. He is often found watching the Discovery Channel in order to see more of his favourite animals on TV.
Roxanne says the help of her mother is a huge blessing for the family, as she lives in the home with them, helping with the kids and house as needed. The Endrinal family hopes to continue homeschooling Cadias as long as it is feasible for their family, allowing Cadias to continue to grow and develop at his own pace, remaining resilient in all of the learning and growing that he pursues.
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Written by Micah Jansen
