When a child has a rare disease, it affects the whole family. Dr. Dawn-Marie Gotkiewicz, pediatrician at Akron Children’s Urgent Care, knows what it’s like. She lost both of her younger brothers, Kenny and Kevin, to a rare genetic disorder called Hunter syndrome. Becoming a big sister “Kenny arrived when I was 2 and a […]
Tenacious Tiffany shines a spotlight on rare diseases
Tiffany Wedekind – also known as Tenacious Tiffany – is a 4’5” force of energy and enthusiasm. She and multiple relatives have the rare, fatal genetic disorder called “progeria” – which causes rapid aging. But she’s not letting that stand in the way of loving life. Tiffany enjoyed an active childhood, participating in dance, sports, […]
Massillon parents face their children’s rare disease with love, strength and perseverance
Richie and Kelsey Williams of Massillon, Ohio looked forward to their date night. It was their first outing since becoming parents. They planned to go to a friend’s wedding and Richie’s parents agreed to watch their five-month-old daughter, Quinn. “My mom called while we were out and said Quinn was sick and throwing up every […]
