At 40, 'Tenacious Tiff' has surpassed average lifespan for survivors of the accelerated aging condition, but she's just getting started
Growing up in Whitehall, siblings Tiffany and Chad Wedekind were like any other children, though markedly shorter (at age 11, Chad stood at approximately 4 feet). Still, they were socially active, pursuing myriad activities. Chad wrestled and played softball, golf and basketball. Five years his junior, Tiffany later took up many of the same sports, as well as cheerleading and dance.
Looking back through pictures, there are noticeable changes in their appearance as they reached puberty. The structure of their noses shifted, and their nail beds shrunk. Tiffany recalled dermatologists studying white spots on her skin in grade school. But there was no serious cause for alarm.
Then Chad broke his femur bone playing basketball.
“[It's] the hardest bone in your body to break,” Tiffany said in a late-May interview Downtown. “A couple of years later he broke the other one. … That's when his struggle really started.”
By age 31, Chad was diagnosed with aortic stenosis, or a narrowing of the heart's aortic valve. He had valve replacement and triple coronary artery bypass surgery. Doctors ultimately discovered both he and Tiffany had a form of progeria, a fatal genetic condition, which causes accelerated aging in children. The Wedekinds inherited the condition from their mother.
Progeria affects one in 20 million people, and common symptoms include stunted growth, hair loss, decreased body fat, stiff joints, stroke and heart disease. The average age of death is 14.
Living well into their 30s, Chad and Tiffany were beating the odds, and were featured in the American Journal of Medical Genetics. But Chad's health continued to decline.
“He had a sore on his toe, and it led to them cutting his foot off,” Tiffany said. “And then when they were in surgery, they needed to go up higher and took his entire leg. … And that's eventually what killed him, because he got an infection.”
Chad was 39 years old.
Seven years later, Wedekind is 40, and therefore the oldest-living known progeria survivor.
“She's unique in several ways,” said Tiffany's doctor, clinical and biochemical geneticist Dr. Kim McBride, who practices at Nationwide Children's Hospital. “She has a change in the same gene [LMNA] that you normally think of for the children who have progeria. … But it's in a little bit of a different spot.”
There is no current cure for progeria, but clinical trials are testing new drugs to help slow the aging process. Dr. McBride, who would like to see Tiffany enroll in one of the trials, is also hopeful that a study of her genetic makeup can help others. And perhaps in the future, gene therapy could be utilized.
“In terms of awareness, there's probably more people who are like Tiffany out there that we don't realize,” he said. “When people think about typical progeria, usually you get this image of young children who look they're in their 60s and 70s, but there are people who probably have milder forms of progeria like this that probably aren't being recognized.”
In the meantime, Tiffany is determined to keep a positive attitude. “I want to be happy and I want to live my life and make sure everybody else knows that you can't sweat the small stuff,” she said. “It could be a lot worse.”
That's a mentality Chad and Tiffany's older brother, Todd, who doesn't have progeria, is adopting as well.
“Especially after my brother [died], you just realize that you can't control things,” Todd said. “Most of these kids [with progeria], they are very excitable [and] very positive-thinking. So if those people in their situation can be positive, and move forward … then who am I to sit around and mope about things in my family?”
Moping aside, sitting still isn't even on the agenda for “Tenacious Tiff,” as she nicknamed herself after hearing the descriptor multiple times. In addition to traveling and hiking, Tiffany runs her own cleaning service. She also started the company Recycled Karma, which sells homemade candles encased in local beer bottles, among other products.
And she will re-open the back patio of the former Double Happiness venue, which closed in late 2017, as a new concept this summer (hers was the glittery sign spotted on the door in late May).
“The front is not gonna be the focus for me right now,” Tiffany said of the Brewery District establishment. “I don't want to take away from Double Happiness. That place had its own buzz, its own magic, and … I don't want to compete with that.”
The entrepreneurial venture is a significant step for Tiffany, who said her condition, as well as her escape from past abusive relationships, has given her a new outlook on life.
“I'm proud that I'm still here,” she said. “I'm like a cat with nine lives [and] at this point I'm on my sixth or seventh. So I really am focused on making a difference and I don't think that I've had my greatest accomplishment yet. … I'm just getting started.”