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Helping a future fashionista grow

Madison Worden, age 13, already knows where she is going to college: Fashion Institute of Technology in New York City. Madison has also created an extensive portfolio of clothing designs, has a penchant for looking sharp that is well beyond her years, and has sold enough of her hand-made jewelry that she bought a Yorkshire Terrier puppy with her own money.

Madison’s backpack, which she wears nearly all day, every day, is not a fashion statement, though. It contains a feeding pump that continually delivers a nutrient-rich formula directly into Madison’s stomach through a tube inserted into her abdomen.

Madison has mitochondrial disease, an inborn condition that severely limits her body’s ability to absorb and store energy from foods. The feeding pump is one critical part of a comprehensive diet regimen created by dietitian Abigail “Abby” Usen of Floating Hospital for Children at Tufts Medical Center. Usen helps Madison get the energy she needs to go to school, socialize with friends, and plan for a promising career.

Before meeting Usen, Madison’s mother Bobbie Worden says she had to piece together advice from many doctors—gastroenterologists to metabolism specialists—to create a diet plan for her daughter on her own. “I just didn’t know how to get the best nutrition for Madison but I knew that’s what she needed,” says Worden.

Usen recalls, “Madison was almost entirely dependent on daily intravenous treatments for her nutrition when I met her.” The treatments left Madison vulnerable to bacterial infections and as a result, she endured prolonged illnesses, absences from school, and frequent hospital stays. Usen took Madison off daily IV injections and worked with the Wordens to use the feeding pump and slowly increase the amount of food Madison ate by mouth—efforts that have greatly improved Madison’s health overall.

“I’m just ecstatic. Madison’s energy is higher. She isn’t sick nearly as often and doesn’t have to miss so much school,” Worden says. “She’s growing. Her protein counts are in the normal range. It’s really just amazing.”

“It’s exciting to see how well kids can do when they are getting the best nutrition they can get,” seconds Usen, a graduate of the master’s degree in nutrition and dietetic internship program at the Frances Stern Nutrition Center, which is part of the Gerald J. and Dorothy R. Friedman School of Nutrition Science and Policy at Tufts as well as Tufts Medical Center. “It takes ongoing partnership and communication with the families to get it just right.”

Usen says her training at the Stern Center helps her navigate the demands of her work in pediatric nutrition in ongoing ways. “Kids are constantly changing and so are their tastes and nutritional needs. What works one week may not work the next,” says Usen. “Fortunately, when I get stuck, I can always turn to my colleagues at the Stern Center for up-to-date information and new ideas."

Usen stays in constant contact with Worden by phone and email to help her continually adjust food and formula supplements to meet Madison’s ever-changing needs. Every few months the Wordens make the six-hour trip from their home in upstate New York to see Usen and their doctors at Tufts Floating Hospital. Worden says the long drive is well worth it.

“Madison has really formed a special bond with Abby. She listens to her and follows her guidance, which is wonderful because she’s at the age where she’s not always ready to listen to her mom,” Worden says with a laugh. “If there’s any new treatment or new research that can help Madison, I know Abby will bring it right to us. I can feel confident we’re getting the best care we possibly can at Tufts.”

Gifts to runners in the Tufts Marathon Team as well as gifts to the Friedman Annual Fund directly support talented and committed students like Abby through their training in programs like the master’s degree in nutrition and dietetic internship program. For more information, contact:

Sean Devendorf
Director of Annual Giving and Alumni Relations
Friedman School
150 Harrison Ave., Suite 241
Boston, MA 02111
tel: 617.636.2949
sean.devendorf@tufts.edu