COVER STORY: KIDS DIRECTORY

Fighting for AIR

Community rallies behind local boy with cystic fibrosis

Posted

Cystic fibrosis is a genetic condition that plagues 30,000 children and adults in the United States, 70,000 worldwide. According to the Cystic Fibrosis Foundation, the predicted median survival age is close to 40, which is a substantial improvement since the 1950s, when children with the disease “rarely lived long enough to attend elementary school.”

Individuals with cystic fibrosis experience persistent coughing, frequent lung infections, including pneumonia or bronchitis, wheezing or shortness of breath, poor growth and weight gain and male infertility. The genetic disease results from inheriting two copies of the defective CF gene, one from each parent.

Amber and Todd Shepherd know well the trials and fears associated with the condition. Their youngest son, David, has cystic fibrosis; although only six years old, he has spent more time in the hospital than people many will over a lifetime.

Meeting David, it’s obvious right away that he’s quite special. A kind-hearted and gentle soul, he enjoys playing with his big brother when he’s well enough, and hanging out on the family farm where, on good days, he can be found driving a toy John Deere tractor his grandfather gave him as a present.

Faced with the reality of every cystic fibrosis attack potentially being his last, David’s family tries to help him live life to the fullest and to remember to cherish every moment they have.

Doctors test for fetal cystic fibrosis during pregnancy, but Amber did not know that David had the genes while she was pregnant with him. She said, “We actually found out David had cystic fibrosis when he was born, through the infant prescreening.”

Living with cystic fibrosis has been a daily battle for her son. He takes seven to 10 pills in the morning before school, three pills at lunch and another three at dinner and he has to do breathing treatments two to three times a day—all this on days when he’s not in the hospital. She said, “I look at David and he inspires me because, even with everything he has to do on a daily basis, he does it with a smile. He is a joyful little boy.”

Shepherd has some advice for other parents who have children with cystic fibrosis or other life-threatening diseases. “Trust your gut, pray for wisdom and never stop being their advocate, because if no one else will fight for them, we will and it pays off in dividends.” She added, “Keep pressing until you get the answers.” She says that children appreciate that.

David’s 12-year-old brother, Caleb, said having a brother with cystic fibrosis is “sorta good at some times and sorta bad at some times” because when David isn’t sick, he is “fun to play with” and when he is sick, he’s in the hospital. He added that David gets sick every three to four months and then he’s in the hospital for at least two weeks at a time.

His advice to other brothers and sisters who have siblings with cystic fibrosis is to “just be as good as you can to them because soon they will not be there as long.” Caleb continued, “They will get really sick and you will only be able to see them one last time.” When Caleb grows up, he wants to help other sick children and spread awareness about his brother’s disease.

There is a barbecue fundraiser scheduled for April 29, with the aim to help the Shepherds pay for David’s medical care. Full disclosure: I helped organize the fundraiser, along with Amber Shepherd, Jonathan Smith and Aaron Brouse. Half the money raised will go to the Cystic Fibrosis Foundation, a nonprofit created to provide funding to search for a cure, and to Dreams Come True, a nonprofit similar to Make A Wish, offering children, most of whom have life-threatening illnesses, the chance to pursue a dream. Clay County Sheriff Darryl Daniels will be in attendance; he’s going to install David as an honorary sheriff. Clay County Commissioners Mike Cella and Gavin Rollins have also been scheduled to be on hand. The Law Offices of Luis A. Montiel is donating a bounce house and other inflatable games for the event; members of the Clay County Fire/Rescue department will drive in on a fire engine and tanker to offer tours and multiple local companies are donating time and resources to the cause.

When Greg Carlisle, owner of North Florida Truck & Equipment Services, learned of the benefit, he immediately agreed to donate most of the food.

“It is our duty as residents of Clay County to take care of those who are sick. That’s why I am honored to help David as he navigates through the debilitating disorder known as cystic fibrosis,” Carlisle said. “Each life is precious and if donating my time and resources will help those in need, I will always be the first one in line to do it.”
____________________ 

BBQ Fundraiser in Support of David Shepherd is held noon-4 p.m. April 29, Fraternal Order of Police, 2475 C.R. 220, Middleburg, $10 adults, $5 kids under 12, 372-3181, eventbrite.com/e/bbq-fundraiser-for-david-shepherd-tickets-32823063667. Details at Facebook.com/events/1466474163364785/

No comments on this story | Add your comment
Please log in or register to add your comment