What is Cystic Fibrosis?
Cystic fibrosis is a chronic, genetic condition that affects digestion and breathing. A primary symptom of cystic fibrosis is thick, sticky mucus that clog the airways in the lungs, causing inflammation and respiratory infections. Children with cystic fibrosis also struggle to gain weight in spite of a healthy appetite and have salty tasting skin.
Cystic fibrosis is progressive and difficult to manage, requiring ongoing medical care. Symptoms may come and go and can range from mild to severe. Children with cystic fibrosis often take numerous prescription medication, and parents are often required to be actively involved in their care. Not only do parents have to monitor the child’s reaction to medication, they also often have to go through a routine of chest therapy that necessitates thumping the child’s chest with a cupped hand for an extended period of time.
Early diagnosis is essential
Newborn screening programs can detect 10% of cases. Sweat tests and genetic tests are often ordered if a child isn’t growing adequately. Cystic fibrosis prevents the body from absorbing nutrients well, so kids with cystic fibrosis are often undernourished and smaller than their peers.
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The Good News
Is there hope for kids with cystic fibrosis?
Children with cystic fibrosis can live lives similar to their peers without cystic fibrosis, depending on the severity of the condition. Researchers are working to develop treatment options, and advancements continue to improve the quality of life for people with cystic fibrosis.
Challenges
What challenges come with having a child with cystic fibrosis?
Treatments and medical appointments require a time commitment by both kids and caregivers, limiting normal childhood activities. The current lifespan for someone with cystic fibrosis is 37 years for women and 40 years for men.
How does Victory Lane Camp help a family raising a child with cystic fibrosis?
Feelings of isolation can be emotionally draining to any family. Raising a child who has cystic fibrosis can feel especially isolating.
Victory Lane Camp is a fully equipped community of caring and compassionate families who understand the joys and challenges of raising kids. We provide camping experiences for families raising kids from ages 3 to 13 who are facing a medical condition.
We use camp experiences to build an intentional community of love and support. Our guided process empowers other families to surround and support a family who is raising a child with cystic fibrosis
Victory Lane Camp specializes in adapting every situation to make every family feel at home. We welcome, embrace, and intentionally meet each family’s needs. As families connect, they encourage each other and share life experiences together outside of camp, ranging from organized events to impromptu family gatherings.
Want to get involved?
Learn how you can be part of this loving supportive community.