Beckwith-Wiedemann Syndrome Clinic Patient Stories

At Chelsea’s 6-month check-up, when her mother, Laura, voiced her concerns, their local pediatrician agreed something was amiss and sent her for an immediate abdominal ultrasound. It came back negative for kidney or liver tumors, the two most frequent tumors found in children with BWSp. “That was a big relief,” says Chelsea’s mother, Laura. “But we still didn’t have a diagnosis.”

Kaitlyn, 12, has remained positive through multiple surgeries for the symptoms of a rare genetic disorder and treatment for an associated cancer.

Alivya traveled to CHOP from her home in Indiana to receive treatment for Beckwith-Wiedemann syndrome. Today, she’s home — and smiling.

Diagnosed with a rare genetic condition that predisposed him to developing cancer, Finn spent the first four months of his life at CHOP, where he survived heart surgery, abdominal surgery, liver cancer and chemotherapy.

Cooper traveled from Rhode Island to CHOP for treatment of Beckwith-Wiedemann syndrome and hyperinsulinism. Now 2 1/2 years old, he is happy, active and intellectually on target.

Jaylene was born with Beckwith-Wiedemann syndrome and hypoglycemia. She was treated at the Congenital Hyperinsulinism Center at The Children's Hospital of Philadelphia.

Leila was diagnosed with Beckwith-Wiedemann syndrome and hyperinsulinism. She was referred to the Congenital Hyperinsulinism Center at The Children's Hospital of Philadelphia.