LEADING THE WAY

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She has been able to maintain good grades and is a member of the National Honor Society.

She is a cheerleader at Seymour High School and also cheers with the Synergy cheerleading squad based in Seymour, which won a national title earlier this year.

For the most part, Megan Cravens has managed to live a normal life despite having cystic fibrosis, a genetic disease that affects the pulmonary and digestive systems.

Through the years, she has conducted a variety of fundraisers to benefit the Cystic Fibrosis Foundation in hopes of someday finding a cure.

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She had a bake sale this past Friday and is now set for the 15th annual Megan’s Wish dinner and live auction April 9 at Celebrations in Seymour. Then May 21, she once again is participating in a Great Strides Walk.

This year’s Megan’s Wish is bittersweet for the 18-year-old since it will be her last one before heading off to college.

Cravens said it’s important to continue the event in the years to come because she has raised more than $10,000 the past two years. According to the Cystic Fibrosis Foundation’s records since 2004, she has brought in more than $118,000 with her various fundraisers.

“I never imagined when I was 18 years old we would be at Celebrations hoping to raise almost $11,000,” she said. “But it’s awesome that we have had so much support. We couldn’t have done it without the community definitely. I think that’s really why we’re still here today doing this.”

After conducting the dinner and auction at the National Guard Armory in Seymour for several years, this year’s event is being moved to Celebrations.

The dinner will start at 4 p.m. April 9, and tickets must be purchased in advance by this Saturday. The live auction will start at 5 p.m., and Cravens said you don’t have to have a ticket in advance if you just want to attend the auction.

Auction items include certificates and items donated by local businesses, amusement parks, hotels and restaurants along with autographed sports memorabilia and more.

Other activities include kids’ games, door prizes, a 50/50 raffle and a silent auction.

Cravens’ mother, Rachel, said the event has come a long way since the first year, which included about 10 auction items and a few activities at Veterans of Foreign Wars Post 1925.

“My how we have grown,” Rachel Cravens said. “This community is just amazing. Talk about some big-hearted people and businesses. I get humbled every time I think about it. My brother and stepdad work hard at collecting donations, and some businesses, they don’t even have to ask. They just walk in the door, and that business owner is already on board. That touches my heart so much.”

Rachel Cravens said she and her husband, Jerry, appreciate everyone supporting all of the fundraisers each year.

“Jerry and I could never do this on our own. The friends, family, co-workers and community are the ones that make it such a success,” she said. “It’s the people who are baking every year for the bake sale. It’s the people who are emailing and calling and saying, ‘What can I do to help?’ It’s the people who look forward to being together at the walk and sharing stories of the heroes and the angels of CF while still supporting the ones that are fighting every day for the tomorrows.”

Megan Cravens was diagnosed with cystic fibrosis at birth. She was born with an extended stomach and had small blockages in her intestines.

Two years after the first Megan’s Wish, she was placed in the intensive care unit with a serious blockage in her stomach that nearly killed her.

Since then, she has gone through having a feeding tube and a port, and she has had about 10 surgeries.

Her pancreas is blocked, so she has to take enzymes every time she eats — five before a meal and three before a snack. She also takes supplementary pills to help regulate her body functions.

About six years ago, she had her feeding tube removed. And in 2014, she had the port removed. That was initially placed under her skin to provide antibiotics.

In July, a new drug, Orkambi, was approved to help people with cystic fibrosis. Megan Cravens began taking it a few months later, consisting of two pills in the morning and two at night.

The life expectancy for cystic fibrosis patients used to be age 37, but this drug is expected to help people live longer.

“It’s supposed to really help thin the mucus, and it just helps the sinuses at lot,” Megan Cravens said. “I feel better, but a lot of people are worse than me, and it’s really helping them a lot. They are starting to cough up more stuff, and their lung functions are getting better.”

In December, during the week of final exams at school, she was hospitalized for pneumonia. She went home two days before Christmas, but her recovery prevented her from participating in a cheerleading competition in mid-January.

Other than that, she has been able to stay active and healthy by participating in cheerleading and other activities.

“That has really helped me keep my lung functions up,” she said. “Especially with all of my treatments that I do, I really need to make sure that I’m on top of my treatments so that I can do cheerleading. If I didn’t have cheerleading, I don’t know what would happen because that is definitely a big thing in my life.”

In the fall, she will head to Indiana State University with the goal of becoming a nurse anesthetist. She said she wanted to follow a medical track after dealing with cystic fibrosis and because her mother is a nurse.

“I basically lived in a hospital in my younger years, and every time I was there, my nurses were just so nice, and they helped me with everything, especially being a 7-year-old going into a major surgery and I’m terrified,” she said. “I remember my anesthesiologist, she was like, ‘You’re going to be fine. I’m going to stay with you, and I’ll hold your hand.’ Right then, I knew I just want to be like that for somebody.”

Rachel Cravens said the final Megan’s Wish before her daughter heads off to college is emotional because family and friends have established traditions with the event.

“What I never want to change is the feeling that comes with the event,” she said. “When I stop in the midst of all of the chaos of trying to keep everything in line at the event and I just look around, I see a building filled with people who love and care for Megan.

“I see people laughing. I see people trash talking each other about how they are both going to bid on the same items and see them crack up laughing. I see family that has busy lives all make it to the same place at the same time. I see an auctioneer that devotes his time and hard work to giving his services for no reason except to be supportive. I feel all of that, and my heart just warms.”

Rachel Cravens said she knows her daughter appreciates the continued support.

“On the days that she gets hospitalized or discouraged, I hope she remembers all of those people and it lifts her up inside and reminds her to keep fighting every day,” Rachel Cravens said. “We will continue to find ways to raise money for CF. We will never stop. We might come up with some different ways or keep doing the same events, but no matter what, Megan will always play a part in our events.”

Rachel Cravens said she is inspired by her daughter for battling cystic fibrosis. Megan Cravens also was an encourager as her mother battled cancer.

“Some people dream of meeting their superheroes. Jerry and I raised ours,” Rachel Cravens said. “When she was little and she would have a temperature of 103 and coughing her head off and still be going a hundred miles an hour, the nurses would say, ‘She’s a fighter.’ She is that and so much more.

“I’m not saying she doesn’t have days where she gets frustrated with the number of medications she takes or complains about having to do treatments instead of being with friends, but she truly knows the importance of it,” she added. “She has days when she would like to just be a normal kid but also knows how much worse it could be. She has a strong support system, and she relies on her faith in hard times. Not all kids with CF have that.”

Megan Cravens also inspires other people with cystic fibrosis by giving them advice and offering words of encouragement.

“I hope they see that she works hard to stay active and she does her treatments and medications and that she participates in fundraising so that new medications and treatments continue to come along until there’s a cure,” Rachel Cravens said.

“I know we may not always be as lucky as we are now with her health because things could change at any moment, but I pray things continue to get easier for those with CF every day,” she added. “I pray the medications and treatments that are coming out due to the money being raised for CF will add many tomorrows to their lives.”

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Cystic fibrosis is a life-threatening genetic disease that affects about 30,000 children and adults in the United States and 70,000 people worldwide.

A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Symptoms include very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with the disease. Many people can now expect to live into their 30s, 40s and beyond.

About 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70 percent of patients are diagnosed by age 2. Nearly half of the cystic fibrosis patient population is age 18 or older.

For those with cystic fibrosis, morning and bedtime routines typically are filled with time-consuming treatments to keep lungs healthy and help break up the sticky mucus that impairs breathing and invites life-threatening infections. Meals and snacks usually are accompanied by dozens of enzyme pills to aid in digestion. Frequent hospitalizations mean missed school and work days and major interruptions to normal life.

For information, visit the Cystic Fibrosis Foundation’s website at cff.org or call 800-344-4823.

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What: 15th annual Megan’s Wish dinner and live auction for cystic fibrosis

When: April 9; dinner starts at 4 p.m.; auction starts at 5 p.m.

Where: Celebrations, 357 Tanger Blvd., Suite 101, Seymour

Cost: $12 for dinner tickets (must be purchased by this Saturday, as none will be sold at the door); $3 for a child’s hot dog meal

Dinner: Choice of barbecue chicken meal or alternative meal, mashed potatoes with or without gravy, green beans, roll, drink and dessert

Live auction: Certificates and items donated by local businesses, amusement parks (including Disney World), hotels and restaurants; autographed sports memorabilia; and more

Other features: Kids games, door prizes, 50/50 raffle and silent auction; drinks and snacks also will be sold during the auction

Proceeds: Great Strides Walk for Cystic Fibrosis to help the Cystic Fibrosis Foundation fund research, treatments and a cure

Tickets or information: Rachel or Jerry Cravens at 812-405-2844 or 812-569-4289

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What: Indianapolis Great Strides Walk for Cystic Fibrosis

When: May 21; registration starts at 3:30 p.m.; walk begins at 4:30 p.m.

Where: Celebration Plaza at White River State Park in Indianapolis

To donate or register: Visit greatstrides.cff.org and search for a walk site or team

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