Meet Ella: A Cystic Fibrosis Warrior
This Two-Year-Old has a Bright Future!
Young Ella, daughter of Jason and Teri Kujawa, is the inspiration for the Inaugural “Roses For Ella Ride”, scheduled for June 25, starting and ending at Traditions Restaurant and Bar in West Fargo.
Ella is a goofy and funny little girl. She is always trying to get a laugh out of anyone who is around her. She loves to join in and laugh at herself as well. She’s very playful and energetic and thinks everything is a jungle gym. Ella also is extremely independent and a bit stubborn, she must do everything herself and gets upset if you try to help her.
Ella’s favorite things to do are play with her dog, Binx, cuddling while watching movies, and going swimming. She has an obsession with shoes, and even has a better shoe collection than her mother. Ella loves music and dancing. One of her favorite songs is “Let it Go” from Frozen. She tries to sing along, which is the cutest thing ever.
Ella is a very easygoing little lady and doesn’t really dislike much. Her biggest dislike is when mom or dad leave for work.
Ella was diagnosed with Cystic Fibrosis at 7 days old. She has two copies of the f508del mutation.
Her parents never really thought anything of the newborn screening; they had no reason to worry about it. Ella looked and seemed perfectly healthy. Neither Jason nor Terri knew they were CF carriers before the diagnosis. (Nearly 10 million Americans are carriers of the faulty CFTR gene that causes CF—that breaks down to 1 in 35 are carriers.)
It was an extremely scary and emotional time when Ella was diagnosed, as this new family knew nothing about cystic fibrosis. Then, they scoured the internet and came to the worst conclusions.
At their first CF clinic visit they became more educated about the advancements in medicine and the ability for Ella to live a relatively normal life. So far, they have been very lucky. CF’s effects on Ella have been minimal. Aside from the occasional miscalculation on medications causing tummy troubles, Ella has not had any complications. Ella even tested positive for COVID-19 on Halloween of 2020, and only suffered a slight fever.
Ella does her vest treatments twice a day along with her nebulizer treatments twice daily. She takes Orkambi morning and night and Creon every time she eats. She’s a big girl and likes to take her vitamins by herself. She has come to love applesauce!
Jason and Teri hope for Ella to live a normal life. They want her to experience all the best things life has to offer. The hope that she gets married and has kids, so she can experience the joy that she brings to their lives. They hope Ella can make her diagnosis into an opportunity to make her mark on her community by helping bring awareness to CF.
