Vivian Ware has the same interests as a typical 6-year-old girl: she takes piano lessons, plays with her American Girl doll and enjoys art class in school.
However, unlike typical 6 year olds, Vivian spends three to four hours a day treating her cystic fibrosis. Every day, she takes 27 pills and has four tube feedings to help her digest her food. She also must spend time in a compression vest to break up the mucus that makes her sick.
But to Vivian, these things do not make her different. For her, she wants as normal a life as any kindergartener, which is why her diagnosis is shared with anyone she meets.
That is how she and Vivian’s parents, Sally and Chris Ware, want it.
“We tell Vivian that her cystic fibrosis is what makes her special,” said Sally Ware. “Everyone has something that makes them special. Vivian is embracing that.
“We tell people right off the bat, because if it is a secret then it’s something to be ashamed of – and it is not.”
For the Ware family, CF not only is part of their daily lives, it has ignited passions that include new careers and spending many nights and weekends raising money to find a cure.
To be closer to home, Chris Ware ended his traveling sales career to start a Papa Murphy’s pizza restaurant franchise.
“I was traveling all over Virginia and North Carolina,” he said. “I was on the road quite a bit.
“I wanted to start a business close to home with more flexibility to help Sally and Vivian.”
The same week the Ware’s family business opened, Sally Ware started nursing school at Carolinas College of Health Sciences. The timing, she said, was not the best; however, the medical knowledge was something she felt she needed.
“I felt like I wasn’t the best advocate for her,” she said. “I didn’t know when to trust my instincts – to balance trusting my instincts and taking your physician’s advice. There is a happy medium.
“I felt there was more that I could do for her. We always focus on raising money, but I felt that my medical knowledge was a part that was lacking.”
She has always been interested in a health career, and now that Vivian is in kindergarten, it seemed a good time to earn her degree in nursing.
When they are not taking care of Vivian, Sally and Chris dedicate their time and energy to raising money to help find a cure.
“We work really closely with the local chapter of the Cystic Fibrosis Foundation,” said Sally Ware. “They have been a huge resource for us – introducing us to doctors and other parents.”
Each year, the Wares, with other family members and friends, participate as a team in Great Strides, a walk to benefit the Cystic Fibrosis Foundation. This year’s walk will take place May 18 at Freedom Park. Team Vivi is working hard to meet its $8,000 fundraising goal.
In addition to participating in the Great Strides walk each year, the Wares plan and host a yearly fundraising event.
“We try to do something fun and creative each year,” said Sally Ware. “One year we did a high-heel race where everyone wore fairy wings and ran in high heels. Another year we hosted a pancake breakfast.”
Most recently, the Ware’s Papa Murphy’s restaurant hosted “Fueling the Fun and Adding Tomorrows,” where the restaurant donated $1 for every lap run at the Ballantyne Elementary School track. In spite of the snow that day, participation was good, and donations totaled more than $2,000, including donations by the restaurant and additional donations from participants.
“The day was supposed to be our way of giving back to everyone, but everyone held us up. It was amazing. It ended up being a really fun day in spite of the weather,” said Sally Ware.
Since Vivian was diagnosed, Sally has worked diligently to raise money for the Cystic Fibrosis Foundation and recently was recognized for raising more than $50,000.
Sally and Chris Ware are working hard to help those with cystic fibrosis, but their most important goal is to help Vivian live to achieve her dream of becoming a pediatrician.
“I want to take care of children,” said Vivian.
Cystic Fibrosis is an Inherited chronic disease that affects the lungs and digestive systems, creating thick mucus that clogs the lungs and leads to life-threatening infections. It also can obstruct the pancreas, which prevents digestion.
Great Strides Walk at Freedom Park will be May 18. Donate to Team Vivi at www.cff.org/greatstrides by searching for “Team Vivi.”
Jennifer Ford is a freelance writer. Have a story idea for Jennifer? Email her at firstname.lastname@example.org.
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