BREATHE EASY BBQ - CHLOE BURNS FUNDRAISER
Come join us on Thursday, June 22nd, in Sutton, NE as we kick off the annual Dugout Days with the Breathe Easy BBQ!
- When: Thursday, June 22nd, 5:00-7:30 PM - Pork BBQ and Silent Auction. 6:30-8:30 PM - Live Music by - "River Bottom Boys"
- Where: The Sutton Park (Rain location - Sutton Community Center)
- Cost: Suggested donation $10 per plate... (or more if you like!)
- Cause: All proceeds benefiting Chloe Burns, a cystic fibrosis survivor.
- If you're unable to attend, prayers and online donations are greatly appreciated!
WHAT IS CYSTIC FIBROSIS...
Cystic fibrosis (CF) is a terminal, genetic disease that causes persistent lung infections and limits the ability to breathe. In people with CF, a defective gene causes a thick buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Approximately 30,000 people are living with CF in the US. In the 1980s life expectancy was less than 20. Now, the median survival age has dramatically risen to 37. To learn more about cystic fibrosis, visit the CF Foundation website:
In 2000, Chloe was diagnosed with cystic fibrosis at age five. She was quite healthy until she was 10 years old and only needed supplemental enzymes to help digest food. For the next few years, Chloe dealt with periodic lung infections, malabsorption, and several hospitalizations. At 14, her lung function began to decline as bouts of pneumonia increased. At 17, she contracted Atypical Tuberculosis in addition to dealing with "typical" CF lung infections. For a full year Chloe took a cocktail of three extremely strong antibiotics to overcome Atypical Tuberculosis. She won the battle, but in the process her overall health and lung function declined. By the end of Chloe's high school career, she had been hospitalized nearly 20 times and her lung function was 45%. Despite the obstacles, Chloe was excited about pursuing her goals and going to college. She was accepted at her top choice, Westmont College in California. While preparing for college, Chloe applied for several scholarships. Below is a link to Chloe's video submission for the Abbvie CF Scholarship which shares what life is like living with CF.
In 2013, Chloe traveled to the west coast to start her college career. During her two years at Westmont, Chloe performed in several mainstage theatre productions, made her directorial debut at the annual Fringe Festival, and was an Arts and Entertainment writer for The Horizon, Westmont's newspaper. Unfortunately, she finished her sophomore year exhausted--with a partially collapsed lung and pneumonia. At that point she had been hospitalized nearly 30 times. It became apparent that life changes needed to be made.
CHLOE'S JOURNEY TO REGAINING HER HEALTH...
For the past two years, in addition to working closely with her CF doctors at Johns Hopkins, Chloe has been blessed with attending a four-week Cystic Fibrosis rehabilitation program at the Dead Sea in Israel. The program includes floating in the mineral rich sea, learning specific lung clearing breathing exercises from a CF specialist, massage therapy to maximize lung function, yoga and stretching, daily exercise sessions, CF lectures, and excursions. The Dead Sea program is unique in that:
- The Dead Sea is nearly 10 times saltier than any other sea/ocean. As the Dead Sea water evaporates, breathing the mineral rich air helps clear and strengthen the lungs. It's an ideal healing environment.
- The Dead Sea is the lowest point on earth. Due to the low altitude, there is approximately 4% more oxygen in the air. It's like being on supplemental oxygen 24/7 without the oxygen tank and tubes!
- Getting sunburned is very rare. The sun's harmful ultraviolet rays are filtered out because of the mineral rich air and low altitude. This doesn't happen anywhere else on the planet!
Overall, Chloe has attended the Dead Sea program four times with excellent results. Each time her lung function improves, she gains weight, and she has an increase in energy and overall wellbeing. After her fourth trip to the Dead Sea in November of 2016, her lung function increased to 55%.
In addition to therapy at the Dead Sea, Chloe has been working with Dr. Luneski, of H.M. Wellness Center for the past nine months. Through nutritional support, Dr. Luneski is rebuilding Chloe's body from the inside out. The health improvements are remarkable! Prior to working with Dr. Luneski, Chloe had continuously taken oral and I.V. antibiotics for over six years in order to survive. Without them, Chloe would immediately develop a lung infection. In January, Chloe's baseline improved. She hasn't been hospitalized in eight months and has been off of antibiotics for over five months!
Chloe is again optimistic about her future, finishing her final year of college, and looking forward to what the next chapter holds.
HOW YOU CAN HELP...
- Pray for Chloe as she continues on her journey.
- Join us at the BBQ for a great night of food, fun, and fundraising!
- Donate online.
- Spread the word - share this webpage with family and friends.
Your generosity will enable Chloe to attend the Dead Sea CF rehabilitation program this fall and to continue working with Dr. Luneski.
Thank you so much and God Bless!
Take life one breath at a time and "Breathe Easy"...