CAMDEN — By PATRIC FLANNIGAN
Staff writer
With the annual Color Run for cystic fibrosis around the corner, the Camden Kiwanis Club heard from one of their own about the importance of the event during a recent weekly meeting.
Kiwanian Jana Garcia shared the story of her daughter India and her battle with cystic fibrosis. From that struggle came the development of “Team India” and the Color Run that will be held in March.
Cystic fibrosis is a hereditary disease that can affect every area of the body that contains mucus glands but mostly the lungs and digestive system. The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas.
Garcia shared that India was diagnosed at the age of four during a time when infant screenings weren’t available. One of the main symptoms in people with cystic fibrosis is their skin appearing extra shiny from the salt that is excreted during sweat but never reabsorbed.
It is possible for a person to be a carrier and not have the disease but when both parents are carrier’s there is a 25 percent chance of each one of their off springs having the disease.
There are only 80,000 people worldwide affected by the disease and about 30,000 in the U.S. Because of this, government funding can be hard to come by. Garcia said that India’s daily regiment includes waking up earlier than most people her age and using an airway clearance machine that cost $22,000 for 45 minutes to breakdown mucus. The device looks like a life jacket and sounds “like a helicopter taking off”. She then takes anywhere from 35 to 36 pills every day and has to wear the airway clearance machine for another 45 minutes before going to bed. India has to keep her BMI around 50 percent to keep her immune system at its best to avoid any illness.
“It’s an expensive disease,” Garcia stated. “On a monthly basis, India’s medicine can run anywhere from 12K to about 60K.”
Garcia said that there are four people fighting the disease in the area – one in Camden, one in Smackover and two in East Camden. People that are diagnosed must stay at least six feet from each other to keep from spreading bad bacteria which was an added concern when India was in high school because one of her classmates also had the disease.
Garcia then talked about the Cystic Fibrosis Foundation that was formed by parents in the 1950’s to help spread awareness about the disease and improve the medical pipeline. It is through the CFF, “Team India” was formed. In its seven years of operation, Team India has raised over $45K.
“We couldn’t do it without Camden,” Garcia stated. “There so supportive of us.”
The Color Run has traditionally been held a week after the Daffodil Festival. The Daffodil Festival will be March 13-14 this year so the Color Run will be the morning of March 21 across the street from the Highland Golf Course in East Camden. Garcia shared that there will be golf carts on hand to help people that are unable to complete the entire 5K and that it is always a fun time.
“Because cystic fibrosis is a disease that requires you to be in good health, we try to encourage every 5K that’s around,” Garcia explained. “But this one is a little bit different just because, you don’t even know that you’re exercising. You’re just waiting for the next color to come at you.”
The event raises $3-4K every year to go towards the CFF, but this year Team India will set aside some of the proceeds to go towards two scholarships. One will go to a freshman in college and another for someone that’s going to go into a trade school. Despite having cystic fibrosis, India was a member of various student organizations, was active in community service and even competed in sports in high school. She is currently a student at Arkansas State University.
“We want to do it for somebody that is kinda like India,” Garcia shared. “Someone that had something that could’ve hindered her life or his life but it didn’t. India, didn’t let cystic fibrosis determine her, she determined it. When she walks in the door she wants you to know India Garcia not cystic fibrosis. So we want to give that scholarship to somebody that’s ready to take that next step of life and fight for it.”
Garcia ended her address by sharing what she describes as “a major step in the right direction” concerning cystic fibrosis treatment. She stated that she is hoping India will soon start taking Trikafta – a landmark new drug that was recently approved by the Federal Drug Administration. Garcia spoke about former NFL quarterback Julius “Boomer” Esiason’s son, Gunner, who has cystic fibrosis. Gunner was at a low point and did care to further his education or work because of his struggles with cystic fibrosis. Within two weeks of taking the Trikafta, Gunner applied for his doctorate and his lung function increased from the 50 percentile to 102 percent.