Meet Molly: A Cystic Fibrosis Warrior
Pamela Thompson • July 9, 2020
Not all cystic fibrosis diagnoses are given at birth.
(As told by Molly's mother)
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.
Our families all live far away so Molly grew up not really knowing her extended family. Her world was her father and I, and that seemed to be just fine to her. Even as a little girl she was so tiny and frail, but full of energy. Constant bowel issues, not wanting to eat, and always coughing. We would take her to doctors and they would treat the symptoms and she would get better. It was a cycle, but we didn't really question anything.
Molly would always keep her attitude up and would work through her daily challenges. She has a sweetness empathy that is so unique and to her. She never met a stranger, only friends.
School however, was a challenge for her as Molly suffers from learning disabilities and ADD. She was in speech programs and had to take PT and OT therapy to catch up on her delays. She worked hard to keep her grades up and to keep up with her peers. Although she loved to play, she struggled with hand eye-coordination and had a hard time with physical activity. We would tell ourselves that she was just a "late bloomer" and she would be fine once she got older and stronger.
Once Molly entered middle and high school she struggled more with her health, she had a nagging cough that would just come and go. She was always tired, didn't want to eat seemed so frail. She had lens implants at 15 for her eyes and she is able to see without the need for special glasses and contacts. She wears reading glasses and is able to drive a car, something we never thought she could do.
After high school her illnesses seemed to get worse. She was wanting to stay home and sleep, coughing day and night and getting so weak. My husband took her to the doctor...again..hoping to get some answers.
We were lucky that for a short time there was a doctor visiting who had her take some x-rays. He told us that she had CF and we were shocked! She was 19!! How could this have gone on so long and we never knew?
My husband and I felt terrible guilt. We had been so focused on her eyes and her learning issues that we never thought this could happen.
Once again it was Molly who took the lead. She said she was glad to know now she could get help. I am amazed at her resilience and positivist attitude! So we started the regimen of breathing treatments, and medications and she has been responding well. She is healthy and has color to her face and she is looking towards a future.
With all she has been through I am so proud of Molly. She is a wonderful young women and daughter and I am so excited to see what the future holds for her. She will still struggle with her health and her learning disabilities but she has a FUTURE now...and that is the most important thing!
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!
The tenth (and final) Walk/Run in Memory of Sonia Balliet-Heidenreich is scheduled for Saturday, September 5 at Oak Grove Park in Fargo. The walk/run will kick off at 10 am and will be followed by a lunch (details on lunch to be determined pending current COVID status.)
