When I was around 20 weeks pregnant, we found out that our daughter, Viviana, had a rare genetic disorder. It was completely gut wrenching and I started to blame myself, but we quickly learned it was nothing that we had caused. We were asked to think about termination due to the outcome of children with Wolf Hirschhorn Syndrome. Children with this rare genetic disorder were unpredictable, but we knew deep down God had big plans for her and we were meant to be in her life.

WHS is so rare that Viviana's doctors had not seen a case in over 10 years. We were told that she may never walk or talk, and that she will be severely delayed. She is working hard to prove those odds wrong everyday. When she was born, we spent 36 long, hard days in the NICU. Since the NICU, we have been in and out of the hospital with new discoveries that we have to learn to manage. Our days are filled with doctor appointments, therapy, and not knowing what will happen the next day. Then we have days where I see exactly why God chose us to be her parents. Children with WHS often don't know their mouth is for food, which has led to struggles with bottle feeding and surgery at just a month old for a g-tube. I can happily say that 14 months later, Viviana is taking all food and drink by mouth!

Being parents to a child with a rare disease is real and hard, but by the grace of God, we get through it every day. We are very thankful for all her doctors and nurses who work countless hours to help us navigate our new normal.