When Callen was first diagnosed and needed heart surgery, his family faced one of the most frightening times of their lives. But through it all, Nemours Children’s Health stood by their side.
“Looking back now, I am so grateful we were lucky enough to get him transported by air ambulance to Nemours Children’s,” Callen’s mother Amber shared. “It was a scary time for all of us, but they really did go above and beyond in every way possible to make sure my son received the best care. We wouldn’t have wanted to end up anywhere else.”
Callen continues his care at the Nemours Children’s Pensacola, Florida, location every six months. Even though the family now lives in Alabama, they don’t hesitate to make the drive. “It’s still 100% worth it for the care he receives at Nemours Children’s,” Amber explained. From urgent surgeries to everyday follow-ups, the team has remained a constant source of comfort and strength.
One of the things the family remembers most is the kindness shown during some of life’s toughest moments. “We were there for many family milestones: Easter, our wedding anniversary, our birthdays and when the care team found out, they went above and beyond to make those moments special,” Amber said. And the family still keeps in touch with Karen Gustafson, the very first person they met at Nemours Children’s. “She met us on the worst day of our lives and helped us through so, so much.”
Through everything, this journey has changed their perspective. “You realize not to sweat the small stuff,” Amber reflected. For parents facing a similar diagnosis, her message is simple: “You are not alone. It can be a very scary time, but you have a great team at Nemours Children’s to help you through every step.”
Today, Callen is thriving. He’s a happy, active child who loves to run and play just like other kids. “He lives his best life! He can keep up with the other kids and play. He played baseball last year and is in the 100-mile club at school and runs before school two days a week,” Amber said. While he can’t participate in contact sports, Callen takes it in stride. “He is okay with that!”
As for the road ahead? Amber hopes Callen continues to thrive. “I hope he continues to realize he is more than a diagnosis. I hope he believes he can do whatever he sets his mind to.”
For Amber, Callen’s journey has also come full circle. Inspired by the care and compassion she witnessed firsthand, she chose a career as a sonographer at the Nemours Children’s Center for Fetal Care. As a mom and a medical professional, Amber sees her work as a way to bring hope to others, just as her care team once did for her family.
