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Gracelyn’s Story

Gracelyn is 12 years old and has Cystic Fibrosis. She was diagnosed when she was 2 years old. Gracelyn is a strong willed fighter.. As of October 4th 2013, Gracelyn has had her lung transplant!

Latest Journal Update

Good news (for once)

As you know, Gracelyn has had a rough time since her surgery in March.

She has been out of breath with the little things we all take for granted. Like, walking up a flight of stairs, walking from the front of the school to the car. I teared up watching her walking around looking for Easter eggs and she became so out of breath she had to stop....It's heart breaking.

It has been unbearable at times. Sonny and I have also had the worst two months of our lives, watching our sweet little girl declining. ( once again)


A month ago, Gracelyn's home PFT machine did not register her lung function. Sonny and I didn't say anything to anyone because we have been terrified. The nurse in Texas said, " there must be something wrong with the machine." I said, " it works fine, I tried it myself." :-(

She kept saying... Give the medication time......give the medication time....,


Well, we did and we waited impatiently and I think it paid off!!!


Gracelyn is not out of the woods yet but there has been a great deal of improvement. Her lung function went from not registering to slowly registering to getting a tad better with each week that goes by. They are still awful numbers but getting better. So, we'll take it:-)

We are happy so say, she can finally walk home from school and walk to school with no problems. She even ran in gym class the other day, thou it was a short distance but hey, like I said... Going from being out of breath if she'd turn around quick...to running a short distance in gym! Yay!!!

Sonny and I are very happy.


I emailed the nurse in Texas today with all the medical info with her vitals, O2 stats, blood sugar info and the tiny bit of PFT improvement.... I was scared for her response..... Thinking it would say, get into the clinic right away......

One minute later I got a response that only said,

"Praise God"



Let's all continuing to pray the lung function only improves with more time.


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Comments

15 Comments

Dean O'Brien
By Dean O'Brien
That is great great news to hear. I look forward to seeing all of you tomorrow.
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1 person hearted this
Carrie Weber
By Carrie & Luke Weber (Vinson)
I am so happy to hear this news!! Yay!! Praying for more improvement!
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Susan Poston
By Susan Poston
Wonderful news! I will keep praying!
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1 person hearted this
Mary Ann Nystrom
By Mary Ann Nystrom
This is wonderful, encouraging news! We are still praying every day. It's SO hard to wait patiently!
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Jennifer Johnson-Darrington
By Jen
Wonderful news Linzi!!! Prayers for her continued improvement!! Way to go Gracelyn!
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1 person hearted this