Blog
Refelctions on the latest Cystic Fibrosis Foundation Registry data
At three years old, Gigi is a bundle of joy, full of energy and curiosity. Starting preschool in January was a big milestone for her, and her favorite part of the day is riding the bus to school, where she gets to experience new adventures and make friends.
I was able to surpass the limitations that used to hinder me and discover the joy of taking my
life back. By refusing to let my cystic fibrosis diagnosis impede me, I have made an entirely new
definition of “running for my life” and can happily say I no longer meet the requirements of
“Failure to Thrive”.
We want to introduce you to Jordan Peterson, our 2023/24 Youth Ambassador. Jordan grew up in Fargo, the oldest son of Dan and Anette Peterson. Jordan was born with cystic fibrosis and underwent a double lung transplant at age 10.
Our story with cystic fibrosis all started when I went into pre term labor at 32 weeks pregnant and found out our daughter had a bowel obstruction. I was only 18 at the time and was terrified. This was also my first child so I was so clueless.
CFA of ND makes it so much easier for us to travel back and for to Minneapolis for my appointments. I had to make many trips this past year and I hate missing school! We would fly down in the morning and back the same day. CFA provided financial assistance to make this easier for us. I have also been on some amazing medications that have helped me stay healthy and many of those came with a big price tag! Again. CFA helped ease the cost of those meds and helped me stay healthy.
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.
People with CF aren’t very different; we just have a disease with no cure (yet) is all. CF is just another challenge of daily life that people like me have to do deal with, and if you have CF and are reading this, then don’t give up. No matter what, don’t give up.
Logan was born in 2005, luckily in the state of Colorado, a state that thankfully had newborn screening for CF at the time (North Dakota does now!). She was monitored with 2 blood tests and she had her first sweat test and cystic fibrosis diagnosis at 28 days of Life. After the whirlwind of emotions and doctors at the Children’s Hospital of Denver, Logan's family learned how to take care of their little girl and then also made the decision to move back to Nikki’s home state of Minnesota to be closer to family and the University of Minnesota!
Molly is our only child and with in days of her birth she was having eye surgery in both eyes to correct congenital cataracts. She had both lenses removed and had to wear contacts as a tiny baby. She had glasses as well that did the same thing as her contacts but only would wear them at home due to the large thick lenses. We called them her "big eyes" as they magnified her eyes so much. Kids can be so unkind to anyone who is different so we made sure that Molly was comfortable and happy with her contacts and glasses. She didn't go to daycare, so my husband would take her with him to work and she was always pleasant and happy.
