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

Faith was an inspiration far beyond the short time we spent with her. She provided a purpose to our lives we never knew we had. Since her birth and passing, she has inspired us to share her life with so many other families and gave us the opportunity to help other families who are facing similar situations. Her short 7 days continue to echo on with each family we get to share her with. She has brought us into a community that we never knew existed, gave us perspectives we never thought we’d have, and provided us with an appreciation we never knew we possessed; An appreciation for life, for time, and for hope. Some people express heart felt sympathies that we had to lose our daughter, but to us she was perfect.

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

The medical community lacks in-depth education on complex trisomy conditions. During our time with Faith, we were confronted by at least one doctor who told us no child with Trisomy 13 ever lived past one year. Oftentimes, our children are portrayed in a harmful light, as if their lives don’t have value. Many medical professionals will push for termination, without providing all the facts of how much light there is in our Trisomy children. Families should always be allowed to make the decisions they feel are best for their situation, but they should also be provided with all the possible outcomes… not just the negatives. By raising awareness, we challenge the narrative that our children don’t have value, or are constantly in pain. By raising awareness, we save potentially thousands of children and pave the way to further medical research to continue to saving thousands more.

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

This is never a community I knew existed, let alone thought I wanted to be a part of… but now I wouldn’t change it for the world. From the first time we attended a SOFT conference and saw the children, it gave us hope. Our journey with Faith never ended. We feel her every time we engage with our SOFT family, or when a friend reaches out for advice because they just received a diagnosis. We feel her when we see her trisomy friends who got to meet their families because her story provided them the strength and hope to continue their Trisomy journey. The most important message to remember during this Trisomy Awareness month is there is always hope. Whatever the story becomes, it’s always a story of hope!