Colt's Story

Q. What condition was your child born with?
Colt was born with Down Syndrome

Q.  were some of the biggest challenges that come with this diagnosis?
Initially when we found out Colt has soft markers for Down syndrome at our 18 weeks anatomy scan, we were terrified. We didn't know anything about Down syndrome, and was unsure how this would affect our lives. Colt was born at 26 weeks which entailed a long NICU stay of 105 days. During his NICU stay he had a stomach surgery and a feeding tube placed. A few months after we were home, he had to go back into the hospital for his open heart surgery repair. His medical complexities are challenging for us. It requires more follow up to doctor appointments , therapies, and closer monitoring.

Q. has this diagnosis impacted you and your child's day-to-day life?
We do have more appointments to attend, and therapies to help him developmentally. However, he brings us such joy! He makes everyday special, and remembering all he has endured and been through makes us cherish each day.

Q. What do you wish others would know about your child's medical condition?
That Down Syndrome does not ruin your life, it enhances it in the best ways. There will be challenging days, but it will all be worth it.
Q. In what ways has your child inspired you or others?
He is so strong. He endures surgeries, appointments, therapies, blood draws, and everything in between with a smile on his face. He never gives up and is all so determined