BATESVILLE — Just over a year ago, Jenna Puente, 9, discovered she had cystic fibrosis. A lump in her belly led to the diagnosis.
The daughter of Tony and Ginger Puente, Batesville, is considered enzyme insufficient. It takes enzymes to break down food. Jenna has a hard time digesting fat and protein.
“I was shocked” at the news, her mother says. Her daughter had never had the classic CF symptoms – bronchitis or pneumonia resulting in multiple hospital visits.
Jenna Puente goes to Cincinnati Children’s Hospital Medical Center every four months for checkups, working with a physician, respiratory therapist and dietitian.
According to her mom, “Right now she has to do two breathing treatments a day” using Hill-Rom’s The Vest. Once the vest, which looks like a life jacket, is inflated, it is hooked up to a machine for 24 minutes each time, puffing air against the girl’s body to loosen mucus.
“In the 1950s, few children with cystic fibrosis lived to attend elementary school,” reports the Cystic Fibrosis Foundation Web site (www.cff.org/). “Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.
“Many people with the disease can now expect to live into their 30s, 40s and beyond.”
Since 1955, the foundation has been the driving force behind the pursuit of a cure.
Nearly every CF drug was made possible because of the foundation’s support and ongoing work with researchers and the pharmaceutical industry.
Research costs money and that’s how area residents can help. Great Strides events across the U.S. raise needed dollars.
A Great Strides Walk for the Cure of Cystic Fibrosis is slated for Sunday, May 20, at Liberty Park in Batesville.
Sponsored by the Cystic Fibrosis Foundation Greater Cincinnati Chapter, registration starts at noon and the walk at 1 p.m.
After participants finish the 5K, “we will celebrate afterwards with a cookout. It will be a lot of fun,” says the chapter’s development manager, Amy Wilson.
When asked if she will be at the walk, Ginger Puente answers, “Absolutely. We started a team last year.” About 35 members of Team Jenna Rae raised $4,000. With 50 teammates this spring, “we’re hoping for more.”
Puente believes the events are funding progress in fighting the disease. “They’re doing excellent on the research. We hear stuff every day.”
The Batesville walk is important to her family “because a lot of people don’t know about what CF is.” Her aim is “to get the whole town involved.”
Wilson expects close to 200 people on 18-20 teams at the Batesville fundraiser. The financial goal for the Batesville event is $41,000.
There is no entrance fee, but participants – individuals or teams – are expected to make tax-deductible donations. Prizes are awarded to participants who attain certain monetary levels. The first $100 raised earns a T-shirt. Other prize levels are $250, $500, $1,000, $2,500, $5,000 and $10,000.
Bobbi Jo Sorber, Batesville, will be there, too. “I got involved last year when a longtime friend of mine, Linda Puente Schomber, invited me to help participate and raise funds for the CF Foundation. Her niece (Jenna) was diagnosed with CF.”
The Batesville Kroger fuel center manager began Team Kroger. “Thirty-five have signed up so far, and they are supportive because of the number of families affected by this disease, not only in this community, but worldwide.”
On her days off, Sorber has manned a table in Kroger’s lobby, collecting $740 in three days. She urges, “Please come join Team Kroger and make this a success for the kids and their families who are affected by cystic fibrosis.”
According to Sorber, Hill-Rom and MainSource Bank also have teams.
To start a team or register online, persons may go to greatstrides. cff.org.
Supporters who want to help, but cannot attend the walk may make donations at the Web site.
Debbie Blank can be contacted at 812-934-4343, Ext. 113; or debbie.blank@ batesvilleheraldtribune.com.