Beyond the Diagnosis in the News

August 3rd, 2015

By: Susan Donaldson James

Patricia Weltin fought relentlessly to have doctors finally recognize the rare diseases that have ravaged her two daughters’ lives — hypermelanosis and Ehlers-Danlos syndrome.

Olivia, 19, has a deformed hand and foot, as well as scoliosis. She has undergone 21 surgeries, including one for a tethered spinal cord. Hana, 16, just had a hip dislocation. “As a mom watching one child in pain is so very hard,” said Weltin, a single mom from Rumford, Rhode Island. “Watching both children in pain is unbearable.”