Her small stature growing up never held Tiffany Wedekind back.
Even now, weighing about 60 lbs. and standing just 4'5" tall — a size that sometimes has others mistaking the 44-year-old for a kid — she recalls a childhood filled with dancing jazz, tap and ballet; playing softball, basketball and tennis; and performing as a junior high school cheerleader.
It would be years before she learned why she wasn’t.
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Tiffany Wedekind, second from right, and friends.Tiffany Wedekind/@tenacioustiffany614
By the time Tiffany reached her 20s, there was no doubt something was seriously wrong. Her hair was falling out, and her teeth were dying. When her older brother Chad, who also had been small for his age, developed a variety of bone and heart issues, doctors looked deeper and made a startling discovery: Genetic tests diagnosed the siblings withprogeria, a rare and fatal rapid-aging disorder, currently affecting 1 in 20 million people worldwide. The disease often kills patients in their teens, and there is no cure.
Tiffany’s condition worsened after her 2010 diagnosis. “I started to struggle when I was in my mid-30s,” she says. Her ailments now include cardiovascular disease, arthritis and calcifications in her knees that are causing them to painfully degenerate. A narrowing aortic valve has Tiffany on constant alert for heart attacks like the one that killed her brother at 39.
Tiffany Wedekind.Tiffany Wedekind/@tenacioustiffany614
But today Tiffany and her mom, Linda, 73, a retired nurse who has the same milder form of the disease that she passed along to two of her three children through a chance gene mutation, are among the world’s oldest progeria survivors, says Dr. Kim McBride, a geneticist who oversees Tiffany’s care. (Neither Tiffany’s father, Michael, 75, nor her oldest brother, Todd, 53, tested positive for progeria.)
Despite Tiffany’s emerging struggles, McBride says, “she still has this wonderful, amazing spark and joie de vivre.”
It’s also why she’s known to friends and Instagram followers as"Tenacious Tiffany"— a Columbus, Ohio, artist and entrepreneur whose disease drives her to make the most of the time she has left, however long that might be.
“There’s so many people that don’t live in the moment,” Tiffany says. “Right now is all we have. I just really want people to appreciate it.”
source: people.com
