What is something unique and special about your child with trisomy that you wish more people knew?

Theodore has a very large hole in his heart but that doesn’t stop us from filling it with love. He is a very happy boy who loves hearing/feeling piano music. Even with more needs and machines he is still a regular baby boy. We are enjoying and soaking in every moment with him. He is 6 months old now and doing amazing, because of this huge accomplishment we had a half way to first birthday party to celebrate with family. We still have a long road of future surgeries ahead of us including closing the hole in his heart, but Theo is showing us every day he is a fighter and so very strong.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

I believe in raising awareness because when we first found out about his diagnoses while pregnant we had no clue what they were or even heard of them. We were pressured by our doctor to terminate the pregnancy and to just give up up when we were looking for other paths. We were told that even if he made it to birth that he would pass away only a hour later. He told us not to look into hospitals that treat Trisomy babies because he really wouldn’t have a life hooked up to machines. Lots of families go through this and believe what they are hearing and ultimately giving up hope. Theodores story has already changed his cardiologists view on trisomy she is a amazed by his progress and growth. She has even said “He is teaching me”. If we continue fighting and sharing our stories of our babies breaking barriers hopefully one day more doctors will change their views on trisomy and more hospitals will provide services.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

I want families all over the world know that trisomy 18 might be a life limiting diagnoses but it is not a death sentence! Every trisomy baby is worth fighting for everyday and every moment is so special. Most importantly you are not alone! During this entire journey we have had the love and support from this amazing community of Trisomy advocates. Each story we hear gives us more hope for the future and I hope our little Theo will bring families hope as well.