This radiant sunflower is Jackie! If you go to Jackie’s instagram page, @ourjourneyforjackie, you’ll see Jackie smiling, playing sports, having fun with friends… being a kid. In addition, Jackie is a pediatric hero courageously living with CHARGE Syndrome. Charge syndrome is a congenital disorder that affects several organ systems.

At 18 weeks, Jackie’s family were looking to find out her gender, but they also found that she had a heart defect and cleft lip that an ultrasound confirmed. For the rest of the pregnancy, there were several appointments and although they kept a close eye, they did not find out about Charge Syndrome until Jackie was born. However, they suspected Charge Syndrome after she was born. They told Jackie’s family that she could be completely blind and had some hearing issues, in addition to a cleft palate.

By 8 months old, they were told that Jackie would need open heart surgery. By 19 months old, she had at least 6 surgeries. Incredible and courageous for a pediatric hero to go through, as well as the family.

You would never look at Jackie and think she had to deal with all of these challenges, Jackie’s mom said. “Her vision and hearing is better than anticipated”. What an AMAZING thing to hear! Jackie doesn’t let this battle get in the way of her life as a kid. The resilience Jackie has shown is obvious, and we are so grateful to be able to share her story. Support Jackie and her journey at @ourjourneyforjackie.