I’m a single mum to 6 kids. Nathan being my youngest. Normal pregnancy no issues or concerns. He was born perfect. So blessed he’s a part of our family. We couldn’t imagine life without him now.
He was diagnosed at 4 months old. He was not meeting milestones. Very floppy as a newborn, he couldn’t hold his head up and would always arch it back whenever he was held. I knew something was wrong when he was about 3 months old. We were referred to a pediatric doctor. Blood draws were taken and results come back advising he had a genetic condition called DUP15Q. That’s when we realized we were grieving a child that was still alive. The scariest and sickest feeling I’ve ever felt not knowing if my baby was going to be ok. Our world was turned upside down. I’ll never forget googling the condition and immediately feeling terrified and sad.
Our life now is based on a consistent routine for Nathan. I’ve noticed that routine helps a lot. We go through a lot of ups & downs, especially medical-wise. We wake up not knowing how the day will be but we continue on as normally as we can. Nathan attends daycare and he loves interacting and playing with the kids. He’s come a long way in this last few years’ slow progress but we are getting there. He’s the happiest boy and he loves to clap and loves the wiggles.
What is your hope for the future of your loved one? For the Dup15q community?: I wish one day there is a cure. I hope Nathan gets the chance to live somewhat of a normal life. I hope he’s happy and healthy.
What advice do you have for newly diagnosed dup15q families?: Grieve as you need to you. It’s ok to feel sad and there are happy days on this journey.