Beckwith-Wiedemann Syndrome Patient Stories

It took the experts in the Beckwith-Wiedemann Spectrum Clinic to give Chelsea’s family the answer they sought: a diagnosis. Now her care is properly managed.

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

The partnership between her doctors at The Congenital Hyperinsulinism Center at CHOP and her local medical team in California is keeping Alina healthy and allowing her to be a typical toddler. However, her beginning was anything but typical.

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.