Page 8 - HealthBeat December 2015

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also has a part-time job at night, she added. “The bacteria that they can get in their lungs is everywhere. It’s in the soil. It’s in the water. It’s in the air,” she said. “Nor- mal bacteria that we can cough out gets
trapped in her lungs.”
Day-to-day care is essential to keeping
Aven healthy, Brittany said.
“Don’t skip any treatments or medica-
tions, because that preventative mainte- nance is crucial to how well they do,” she advised other parents who are caring for children with CF. Patrick agreed that com- pliance with treatments, hand washing and exercise improve the quality of life for both children with CF and their parents.
On the other hand, Brittany said, they try to make sure Aven has as normal a childhood as possible.
“You have to be cautious, but you have to let them live as well,” Patrick said. “It’s a difficult balance.”
“We learned from experience,” Brittany said. “We tried to keep her in a bubble, and you can’t do that.”
Although Brittany and Patrick’s diligence helps maintain their daughter’s health, it is impossible to completely protect her from complications resulting from CF.
“From the beginning, I was just so de- termined,” Patrick said. “I was like, you know, if I can do this and do that, we won’t have these issues, and it wasn’t the case. It doesn’t matter how much you do; they are going to culture things.”
Aven has been hospitalized six times in the past nine years because she has cul- tured bacteria such as pseudomonas in her lungs, Brittany said.
While in the hospital, Aven said, she had to get a peripherally inserted central cath- eter so she could take intravenous antibi- otics. She also took extra vest treatments and had X-rays and pulmonary-function tests, she said.
“I only get to leave my room a few times while I am there because there are too many germs in the hospital. Sometimes I get bored, but when I get to have pet ther- apy and music therapy, it makes me really happy,” she said.
Brittany said the cystic fibrosis center at Arkansas Children’s Hospital has been a big help to her family.
“We have got a great CF care team,” she said.
Networking with other parents of chil- dren with CF has also brought them re- lief, she said. Social media also helps raise awareness about CF, Patrick added. In addition, children with CF often connect to each other through social media because they cannot meet in person, Brittany said.
Aven’s parents, Brittany and Patrick Emery, found out that Aven had cystic fibrosis after she had emergency surgery for an intestinal blockage when she was 3 days old. Now, they said, Aven is in good health for a cystic fibrosis patient.
This is because children with CF are highly contagious to each other.
“Each person with CF carries their own set of germs or bacteria in their lungs, and those bacteria are not a problem for people who can clear their lungs normally, like us without CF, but for other people with CF, they can actually share each other’s germs, and that can be a problem,” Willis said.
“When you’re in close quarters, it is very dangerous,” Patrick said. At out- door fundraising events, CF patients wear something to identify themselves and stay at least 6 feet apart, he said, and when Aven visits the hospital, she wears a mask anytime she is not in her own room.
The Cystic Fibrosis Foundation’s guide- lines state that only one CF patient should be present at indoor events, Brittany said.
“CF is kind of an isolated disease, and so- cial media has been great because only they know what they’re going through,” she said.
“It makes me feel good knowing that there are other kids that have to do treat- ments like me, and that I am not alone,” Aven said.
Although Aven has spoken to other people with CF by phone, email and social media, and has received thoughtful gifts and notes of encouragement from them during her hospital stays, at this time, she
is more interested in playing soccer and performing at local theater venues with her friends, Brittany said.
“We are blessed that, on most days, Aven feels like everyone else. It is the days that CF is making its presence known that we are especially grateful for our fellow CF’ers and their families, our caregivers and the medical community,” she said.
Brittany added that there are several older CF patients who share their stories through social media.
“They are a light to others,” she said, “and as a parent, when one of those lights dims, it’s almost more than you can bear. You just feel so vested in each patient and family that you meet. You fight their battle with them.”
FUNDRAISING FOR THE FOUNDATION
Brittany said she joined the board of the Arkansas chapter of the Cystic Fibro- sis Foundation because she wanted to be more involved in the fight against CF. In her role, she has met with U.S. Sen. Tom Cotton, R-Ark., and requested a meeting with Gov. Hutchinson to discuss improv- ing laws that relate to CF, she said.
In February, she will visit Washington, D.C., for March on the Hill, the foundation’s
flagship advocacy event, to talk to legisla- tors about issues that affect CF patients, she said.
Fundraising for the foundation is im- perative because cystic fibrosis is an “or- phan disease,” meaning it affects fewer than 200,000 people; therefore, does not receive federal funding for research, she said. The foundation has funded every CF drug available to patients, she said.
“Approximately 90 cents of every dol- lar raised goes straight toward research, so they’re a very effective foundation,” she said.
Aven and her family participate in a variety of fundraisers. Patrick, an avid cy- clist, created the annual 65 Roses Tour, a bike tour in Searcy that benefits the Cystic Fibrosis Foundation. Patrick said he was inspired by the plethora of bike tours ben- efiting other causes.
“I just wanted to have one for cystic fi- brosis to raise awareness,” he said. “Also, I just know so many people within the cy- cling community that I knew it had the pos- sibility of taking off and being a standing event. So far, it has been for six years. This will be our seventh year.”
He said his sister, Amber Carson, was in- strumental in organizing the tour.
“He birthed the idea, and she made it happen,” Brittany said.
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