Both Ciaran and I have 22q. I was diagnosed at 21, and Ciaran at birth. I didn't know I had it until my diagnosis, but I had all the classic signs. Born with a cleft palate, I struggled with speech until I had surgery at 6. Even though my speech improved, I still found it tough to keep up with my peers and was often sick. Over time, I learned to cope with my challenges in my own way.
When I was pregnant with Ciaran, we discovered at our 20 week scan that he had severe heart problems. I was offered a termination, but I refused. Ciaran was later diagnosed with Tetralogy of Fallot and 22q a diagnosis that, while shocking, answered many of my own questions about why I had always been so unwell.Ciaran has had 12 surgeries to date: 7 cardiac catheterizations, 4 open-heart surgeries, and 1 cleft palate surgery. We travel to England for his treatments. He's faced some life-threatening complications, but without surgery, he wouldn't have survived. While they can't fully fix his heart, each procedure helps extend his life.
Now, at 16, Ciaran is thriving. He volunteers at a charity shop and loves spending time with his friends and family. We know he'll need more surgeries in the future, but for now, he's defying the odds and continues to inspire us every day.