Home > About the Foundation > Our Stories > Rare Disease Day > James’ Story

James’ Story

James was misdiagnosed at birth and we as parents just knew he had CHARGE. We pushed for further testing and confirmed we were correct. We got the treatment we needed after being transferred to Cincinnati [Children’s Hospital] who were more equipped in CHARGE and James’ conditions.

Since being home after a 9 month hospital stay James has gone above and beyond with what he can do now compared to those 9 months in the hospital and we are so proud of him.

What would like to tell others about CHARGE syndrome:

Without the CHARGE community we would have never learned about Cincinnati [Children’s Hospital] and all they can do for those with CHARGE syndrome. They helped us encourage James to keep going/working harder with the needed resources and he has definitely shown us what he’s capable of!