On September 3, 2013 our son stood in line and walked into class for the first day of school. A typical milestone in any child’s life, it was especially poignant for us.
When Owen was only a few months old, we began to notice he was not meeting milestones. The doctors wrote it off as Owen being born premature, but we knew there was something more. In November 2010, at only 15 months old, Owen was diagnosed with Kleefstra syndrome, a rare genetic disorder resulting from a micro-deletion on one of his 9th chromosomes. Along with a host of medical implications, doctors said Owen may never walk and would be non-verbal. We were devastated.
Enter the dedicated team of paediatric therapists at Grandview Children’s Centre determined to support Owen’s development. Owen has been attending speech therapy, physiotherapy and occupational therapy at Grandview for five years. In January 2013, Owen took his very first steps under the watchful eye of his physiotherapist Winnie. She was as excited as we were, and it meant so much to be able to share that moment with her.
Owen is one of only 350 people in the world with a diagnosis of Kleefstra syndrome. Living with a rare diagnosis can be very isolating. Our Grandview family has supported us, and at times, carried us through. Whether it is the wonderful clinical staff, volunteers or all the amazing families we have met on our journey, Grandview plays an important part in our family’s story.
Grandview has supported us for all these years. We are happy to return that support so other families may experience the success and joy that we have, and with Grandview’s continued help, will no doubt continue to experience for years to come.
- written by Owen's Mom, Andrea Belanger