Aidan is a 10 year old boy who attends Mr. Colbert’s grade 5 class at Woodland Public School. You can sometimes hear him being referred to as the ‘Mayor of Woodland’ throughout the halls as he knows everyone and always checks in to make sure they are okay. He is a great big brother to his sister, Ava, and loves spending time with his dog, Kaiah.
When Aidan was two years old, he was diagnosed with a rare genetic syndrome referred to as 17q21.31 microdeletion syndrome. It wasn’t until a few years later, that it was renamed to Koolen deVries Syndrome (KdVS) after Dr. David Koolen and Dr. Bert deVries. With only approximately 350 individuals throughout the world and less than 10 known cases in Canada, it is very difficult to find information on the syndrome and long-term effects. Thankfully, we have been able to attend several patient advocacy summits where we gather with other families with individuals who have KdVS to share stories and meet with specialists to learn about progress with the syndrome.
With the syndrome, Aidan is challenged with global developmental delays. These include physical (low muscle tone) and intellectual delays, and he struggles with staying focused and on task. He also experiences anxiety and stutters when he becomes anxious. Thankfully he does not experience some of the more severe symptoms of KdVS such as seizures, heart defects or kidney problems.
Once someone has the opportunity to meet Aidan, they are greeted by his cheerful, sociable, and cooperative disposition. He is incredibly empathetic and is known for putting the needs of others before his own. He has an amazing memory and can remember the smallest detail from a fleeting moment from years ago. Although Aidan sometimes has difficulties with social cues, programs offered through NADY such as the recreation program, provide opportunities for Aidan to participate in community events with a group of his peers. While it can be difficult for him to make friends at school, he always looks forward to Saturdays when he can see his ‘NADY’ friends and gets the opportunity to just be a kid without the stresses of being different.
Through the volunteer, parent-led NADY organization, Aidan has been lucky to participate in programs such as the recreation program, horseback riding, downhill skiing with the Nipissing Trackers (and their special guest Rick Mercer), and singing O Canada for a Battalion home game.
Aidan also plays hockey for the North Bay Shooting Stars and has been on the basketball and cross-country running teams for Woodland. During the summers, Aidan loves to spend time out at the cottage swimming, ATVing, going for walks to the Enchanted Forest and enjoying the occasional campfire s’more. Aidan has a passion for music and thanks to the generosity of the Rotary Club, Aidan was able to take piano lessons with the North Bay School of Music.
Aidan always looks forward to Kevin’s Longest Morning as he gets to see firsthand the hard work and dedication of everyone involved and he couldn’t be more thrilled that this year he is able to participate!
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