Finding Hope Before Birth: Colette's TSC Journey
When Aaron and Kelsey learned during pregnancy that their daughter, Colette, had tuberous sclerosis complex (TSC), their world changed overnight.
A rare genetic condition, TSC can affect multiple organs throughout the body (including the brain, heart, kidneys, and lungs) and often causes seizures and other neurological complications. Knowing Colette would need specialized care from the very beginning, Aaron and Kelsey immediately set out to find the team they believed could give their daughter the best possible start—even before she was born.
Finding Answers Before Birth
Their search ultimately led them from Iowa to Cincinnati Children's, where they hoped to find not only expertise, but also a team they could trust at one of the nation's leading Tuberous Sclerosis Complex programs.
“Cincinnati [Children’s] is on the cutting edge of research studies, so that’s where we wanted to go,” said Aaron.
From the moment they walked through the doors—and later met Darcy Krueger, MD, director of the Tuberous Sclerosis Clinic—they felt they had found the right place.
Providing Expert Care—and Hope
Dr. Krueger and his team understand that for families dealing with a rare diagnosis, expertise matters—but so does feeling heard. Families need answers. They also need someone who will take the time to listen.
"He gave us a lot of hope," Kelsey said. "He went through all of Colette's scans. He took so much time just getting to know us as a family."
Because Cincinnati Children's cares for so many children with tuberous sclerosis complex (TSC), the team has experience managing even the rarest and most complex cases.
"Patients come to us from all across the United States and literally across the world to receive tuberous sclerosis care with us," Dr. Krueger said. "Even rare manifestations or rare situations—we've often seen and dealt with."
