Carlye Glonchak

May 11th, 2024

Hello, my name is Carlye, and my daughter has Cystic Fibrosis; this is my heart! This message is the story of Katelyn and all that she has conquered. If you want to walk, here is the link: 

2024

Katelyn has remained healthy; she jokes that she is the healthiest person in our family. She isn't wrong. I think because of her medications and breathing treatments, she often doesn't get sick when we do. We are grateful for this.  She still has hospital visits quarterly and different procedures regularly, but because of the Cystic Fibrosis Foundation, Katelyn gets to live a relatively "normal" life.  She has been loving soccer this past year, and we have seen her grow significantly in her athletic ability.  She was diagnosed with Asthma, but we have managed this through her daily treatments, and it hasn't stopped her from being on the go.  Katelyn is a Girl Scout with an amazing troop of girls who love and support her.  She is thriving.  Thank you, everyone, for your support over the years.  

2023

 So much has changed in the last couple of years. We have been healthy.  She had a hospital stay in November of 2022 but recovered from back-to-back flu cases.  We all got COVID and survived at home in December 2021. COVID was scary initially, but Katelyn managed it like a champ.  This is thanks to Cystic Fibrosis Foundation and her current medications they support financially.  (Well, all of our donations and support.)  

I first wrote this letter in 2019;

There are two ways to go when you have a child with a terminal illness. You can let it defeat you, or you can defeat it. We went through the stages of grief when we found out we were carriers of this disease, and then we ran towards Cystic Fibrosis head first. Cystic Fibrosis is hard on our family, but that is nothing compared to what Katelyn has to endure. At nine months old, Katelyn was put under general anesthesia for a bronchoscopy, an MRI, a lung function test, and a wire put down into her tummy through her nose to check her digestion and reflux. They pried her out of my hands and walked through those double doors in the hospital, and 4 hours later, we got to see her. The news was that she already had damage; she had been silently aspirating on reflux, her lung function was just okay, and we had to clean her lungs. Nine months old! I held our baby girl so tight that night. But I didn't cry; I wouldn't let her see me cry.

She promptly pulled the wire out of her stomach, so a few months later, we took poor Katelyn to get the wire back in so they could see how the reflux was doing. This time she was awake, and I had to wrap my legs around hers and my arms around her body and hold her down while she screamed and fought, and they jammed a tube down her nose into her stomach. But I didn't cry; I couldn't cry!

At 18 months, Katelyn had cultured Pseudo, and we were back in the hospital getting a bronchoscopy, biopsy, and a lung cleaning. They let me go with her this time, and I held her while they put a mask with anesthesia on her face, and I sang to her, watching her eyes roll back into her head and holding her limp body. I didn't cry; I had to stay strong for her. The results turned out to be Pseudo-FREE. Yay! But she had more lung damage, and she had what they call mucous plugs, making breathing hard. NOOOOO!

The best news came when we learned that Kalydeco was approved for 2-year-olds. Kalydeco is our miracle, the Cystic Fibrosis Foundation joined with Aurora Biosciences, and in 2012 the FDA approved this miracle drug for six and over and then in 2013 for two years and older. We had kept Katelyn home during this time; no parties, no church, no friends. This was our first quarantine round; when COVID hit, it was much of the same. But when she turned 2, life would start for her and us. We traveled, went to birthday parties, and saw family and friends we hadn't seen for two years. I cried with joy that our baby girl could live.

Katelyn started preschool two days a week, and a month later, we were in the hospital. She had three viral infections and two bacterial growths in her lungs. She had such high fevers we had to pack her body with ice. They poked and prodded her, but I still didn't cry. She was so strong; I had to be strong beside her.

After we were released from the hospital that first time. I drove to work, and I cried, I cried, and I cried. It was the realization that Katelyn could be taken away from me, that any one of those infections could have taken her to Jesus. I cried to Jesus and I said, "She is your." I will fight for her while I have her, but Jesus, she is yours, and if you think it is time to take her, I will know she will be walking with you. She will be able to breathe, the damage to her lungs will be gone, she will not have to do hours of treatments, and she will live for eternity. But, BUT I will fight to keep her here until that day comes. I will do whatever is in my ability to let her live (not in a bubble) but to truly live. I will not cry so that she may be strong! I WILL, and So WILL SHE!

In February 2019, she returned to the hospital only weeks before the closure. It was scary, but she was coherent and able to talk with us, which helped. We knew she had the flu, but we weren't sure why it severely impacted her lungs. She had been declining steadily for several weeks, and it didn't seem to improve.
It took her a bit to recover from that illness and regain what she had lost. Who knows, maybe it was COVID; even her baby brother went into the hospital. Before COVID, she was like a normal child; she got colds and sick, and other than hours of treatments, she is getting better without going to the hospital. We are slowly entering the world again. She sold 750 boxes of Girl Scouts Cookies this year; she is doing gymnastics and playing softball. On top of that, she swims weekly. When you look at Katelyn, all you see is a thriving girl, and we are back out of the bubble, letting her live her best life. She is now on an even better medication called TRICAFTA; thank you, CF Foundation, And thank you to all of our friends and family members who have donated to this amazing cause. We wouldn't be where we are without you.

It is so hard to ask for money; however, this isn't for me. It is for the parents who find out they have a child with a terminal illness and they feel helpless; it is for the siblings who have to be without their parents while they are at the hospital and who have to wait to do fun things while their siblings are doing their treatments, and ultimately this is for the kids and now adults that have to live daily with difficulty breathing, tummy aches, medications, and more medication. It is for a baby who is getting treatments done at six weeks old or the toddler who can't go play outside until they have taken all their medication, and even when they finally get to play outside, they have to take breaks just so they can catch their breath, it is for the school-aged student who gets sick the first week of school and misses a month, it is for the teen who cannot go to their prom because they are in the hospital, it is for the college student who has to move home because they are so sick, it is for the young adult who wants to have a family but fears the loss that child will have if they do not survive this horrible disease. I ask I beg, I plead for help so that all of these people can live a life where their dreams come true.