Page 7 - HealthBeat December 2015

SUBMITTED PHOTO
Aven Emery, 9, hosted a lemonade stand at the Arkansas State Capitol on Aug. 26 to raise money for the Cystic Fibrosis Foundation. Gov. Asa Hutchinson visited the stand to declare the day Cystic Fibrosis Day in Arkansas.
“It looked like a parade,” she said. “We almost ran out of lemonade.”
One of those in line was Gov. Asa Hutchinson, who smiled as the youngster carefully passed him a drink. He also is- sued a proclamation that the day, Aug. 26, 2015, would be Cystic Fibrosis Day in Arkansas. The money raised at the stand helped make the future a little brighter for children like Aven, who has cystic fibrosis, commonly known as CF.
Cystic fibrosis is a genetic condition that causes a buildup of mucus in certain organs of the body, such as the lungs and the pancreas, which can lead to lung in- fections and digestive problems, said Lau- ren Willis, Cystic Fibrosis Center coordi- nator at Arkansas Children’s Hospital.
There are about 300 patients with CF in Arkansas and 30,000 in the United States, said Aven’s mother, Brittany Emery, who is a board member for the Arkansas chap- ter of the Cystic Fibrosis Foundation.
In the 1950s, most children with CF did not live long enough to attend ele- mentary school, the foundation’s website states, but advancements in treatment have raised the median life expectancy to nearly 40. Although that statistic shows progress, it can still be disheartening to parents, Brittany said.
“When [Aven] was born, average life expectancy was 36, and that’s hard for a parent to swallow,” her mother said.
Aven was born with an intestinal blockage called meconium ileus, which required her to have emergency surgery when she was 3 days old, Brittany said. Aven’s surgeon told Brittany and her husband, Patrick Em- ery, that infants born with meconium ileus
WHEN SHE WAS BORN, AVERAGE LIFE EXPECTANCY WAS 36, AND THAT’S HARD FOR A PARENT TO SWALLOW.”
BRITTANY EMERY OF MAUMELLE
usually have CF, which causes a sticky di- gestive tract that can lead to blockages, she said.
The worried parents searched for CF online, which Brittany said was not the right approach. She said they were “over- whelmed and devastated” when they learned that CF is a life-threatening dis- ease with no cure.
“Not knowing what her future was going to look like was very scary,” Brittany said.
DAILY TREATMENTS
Aven is currently doing well from a med- ical standpoint, Willis said, adding that Aven’s growth and nutritional outcomes are good, and her lung function is normal.
“This is due to her efforts, and the fam- ily. We always have to give credit to the family, too, for following through with the recommendations and doing their treat- ments every day. They can be long and burdensome,” Willis said.
SUBMITTED PHOTO Aven’s lemonade stand, which was sponsored by Arkansas Blue Cross and Blue Shield, gained attention on social media with its hashtag eLemonadeCF. Aven said she had wanted to host a
lemonade stand since she was 5 years old.
Aven wears a vibrating vest for 30 min- utes three times a day to break up the mucus in her lungs, Brittany said. She also plays soccer, which Brittany called “a natural form of physical therapy” be- cause, like the vest, the activity helps clear her lungs.
In addition, Aven takes inhaled antibi- otics and mucus thinners, and she also takes about 10,000 pills a year that con- tain enzymes that help her absorb fat and fat-soluble vitamins. Like most people with CF, Aven is pancreatic insufficient, Brittany said.
“Pancreatic insufficiency is where the di- gestive enzymes are not released. The thick mucus prevents the release of digestive
enzymes that help the body break down food and absorb nutrients,” Willis said. The enzymes Aven takes before every meal and snack help her digest and absorb food properly, she added.
Aven’s parents decided to home-school their daughter in order to avoid expos- ing her to germs commonly found in pub- lic schools, Brittany said. While she works at Arkansas Blue Cross and Blue Shield during the day, Patrick stays home to act as Aven’s learning coach through the Arkansas Virtual Academy, Brittany said. He
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