Published

the week of Nov. 2, 2015

The Jones County News

Those affected by Cystic fibrosis grateful for community support

Leading up to Chaptacular Chainsaw Carving Bash 2015, we are featuring articles each
week exploring this charity event, how it benefits the Cystic Fibrosis Foundation, and how
Cystic fibrosis affects our community.

Two-year old Hayden Hinson sat inside on a beautiful October day. She blew bubbles and
played with balloons by her bed. Her mother, Jones County native Harley Hinson, spoke of
Hayden Hinsons love for the outdoors. However, the Hinsons will likely remain inside the
walls of Henrietta Egleston Hospital for Children for the next 10 to 14 days.

I never knew the extent of what (Cystic fibrosis) was until I had Hayden, said Harley
Hinson. But I knew that she was the best thing that had ever happened to me. I wouldnt
trade her for anything in the world.

Hayden Hinson was born in Jones County and diagnosed with Cystic Fibrosis (CF) when she
was a week old. Her sweat test, a common test for CF, was positive, and Harley Hinson
immediately began to learn about the genetic disease and adapting to Hayden Hinsons
treatments.

Its a little different form any normal kid, but its just a routine. I dont think theres really a
challenge, said Harley Hinson. Shes fantastic and I wouldnt change anything about her.

While most individuals with CF are diagnosed within the first few years of life, 19-year old
Jones County native Luke Nelson was diagnosed at age 11. His family and doctors initially
thought he had childhood asthma and possibly irritable bowel syndrome. Nelson began to
have more issues with his digestive system, and the doctor ran medical tests to try and
diagnosis the issue. His sweat test for CF was positive.

Initially it was very shocking, said Luke Nelsons mother, Sandy Nelson. We didnt know
much about the disease. I only knew one person with it it was scary not knowing what we
were getting into.

Upon diagnosis, Luke Nelson was admitted to the hospital for IV antibiotics. He entered the
hospital with 61 percent lung function and a body mass index of five percent. After around
three weeks of hospitalization, Luke Nelsons lung functionality had risen to 82 percent.



When I look back at it now, it really is the turning point that changed his life, that boosted
his health, said Sandy Nelson. You would never even know he was sick; he is able to do
anything he wants to do. He doesnt really have any limitation in that regard.

Luke Nelsons treatment includes wearing a percussion vest used to clear his airways twice a
day for around 30 minutes, He takes antibiotics and hypertonic saline and Pulmozyme
solutions through a nebulizer. He takes around 60 or 70 pills each week plus enzymes. Harley
Hinsons treatments are similar to Lukes but she does not take as many pills as he does,
although her medications will increase over time.

The older you get the more pills you get, said Haley Hinson.

The Nelsons and Hinsons are thankful for the support they receive from the Jones County
community and their families.

Fortunately the community has always supported Luke. He never had the issues of friends
putting him down or calling him different, said Sandy Nelson. He has always been totally
accepted by his community and his friends.

Now a sophomore at Abraham Baldwin Agricultural College, Luke Nelson says that the
support system from the Middle Georgia community has helped him. His teachers have been
flexible with helping him work away from school if needed, and his youth group and friends
visit and check on him when he is hospitalized.

The community has always had our back, said Luke Nelson.

Chaptacular is a way the community has supported the Nelsons, the Hinsons, and the
foundation. While the event raises thousands of dollars for the foundation, Luke Nelson is
thankful for the educational platform the event creates.

I think each person who comes here learns to love Luke and support his cause. Weve made
some truly great friends who have been able to take that to the area where they live as
well, said Sandy Nelson.

Harley Hinson is grateful for the Cystic Fibrosis Foundation and its efforts to find a cure for
CF. Although she and her daughter recently moved to Roswell, Ga., she still appreciates
Chaptacular and the ways that it positively impacts the community while raising awareness
for CF.

It helps so many people learn about Hayden, Luke or anyone who has CF, she said. Its
also great to raise money because the way I think about it, the more money we raise now,
theres no telling the kind of drugs we will have when Hayden gets older.