Thirteen-year-old Girl Scout Anika Raj has lived all her life with Cystic Fibrosis (CF).
CF, she explained, “is [a] genetic recessive disorder, meaning it is passed down generationally from genes of both parents, where the body produces thick and sticky mucus, primarily affecting the lungs and digestive system. This results in respiratory and digestive challenges but is met with resilience and adaptability by those living with it.”
This means that since birth, Ani, as her friends call her, has needed to take about 24 pills per day depending on how much she eats and the amount of fat in the food she consumes.
“There are things that do bother me, like the amount of pills I have to take or the fact that I get extra sick whenever I have a cold, but since it’s a genetic condition, I have had it from the day I was born,” said Ani. “Since I have had it that long, it has become a part of my life that I am pretty used to, but by no means do I enjoy it.”
“CF has merely been something I must learn to navigate,” she continued.
After giving the same spiel over and over, the member of Girl Scout Troop 61090 was inspired to dedicate her Silver Award Project to the condition. On May 5, she led a 5k walk of awareness.
On the day of the event, Ani provided donuts, drinks, snacks and information packed handouts about CF. Participants included girls from her troop, school friends, teachers, family members and those from around her neighborhood.
Ani set up purple balloons to mark out the track, decorated the start and end, plus she gave each individual a medal at the end with a bronze colored “5k” on one side and a sticker, designed by her, with the words “One small step” and “2024 Cystic Fibrosis” on either side.
“The walk was a great way for me to learn more about what Ani faces in a day to combat CF,” said Ani’s friend Emily Chu, who joined in the walk.
Another friend, Emma Wu, mentioned, “At the start, I wouldn’t have even been able to confidently tell you what disease Anika has if you asked, but now I know all about Cystic Fibrosis and I got a donut!”
On the flyer that she provided, Ani was able to describe generally what CF looks like. She mentioned how there is no current cure yet but “research and time have meant that people with CF now have access to more treatments and medicines than ever before!”
She even went on to include, “The life expectancy for people with CF in the 1930s used to be around 6 months! In 2024, that age has skyrocketed to 86 years thanks to new research and medicines!”
For the future, Ani says she hopes to lead the event again with a larger capacity and possibly even branch out to awareness of other, lesser known, diseases.
“My goal was to inform others about what CF is. A lot of people only know about major diseases that affect everyone’s lives, like cancer, Alzheimer’s, or diabetes,” she said. “Those are very important to know about, yes, but there are other diseases that affect the lives of everyone who has them drastically that are very down low and fly under the radar. So, my goal was to teach others about one of the many diseases that affect people’s lives a lot.”
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