My Great Strides Story
Joe Pearson
Fundraising for Kansas City Great Strides
Joe Pearson
In October of 2019, our family moved from Utah to Missouri. Exactly two weeks before that, Joyliana was admitted into Primary Children's Medical Center for two weeks. You read that correctly. Joyliana was in the hospital for two weeks while we packed up our house and got ready to move across the country. In fact, we left the day after she was released.
These hospital stays have been an unfortunate effect of Cystic Fibrosis. The CF community calls them a "clean-out" but the doctors call them an "eradication" They load her up on all kinds of strong medications to kill the bugs that have embedded themselves in her body.
Since we moved to Missouri, Joyliana has been blessed immensely. While her health has had ups and downs, it has been trending up. She has a very positive outlook on life and is hopeful for a great future.
I have been scanning my Facebook history and I found a couple of little posts about Joyli's journey that I would like to share.
November 15, 2023
Please pray for Joyliana. She has a medical procedure today we are very nervous about.
December 22, 2020
Joyliana's appointment at Children's Mercy hospital yesterday did not go well. Her lung function continues to fall at an alarming rate, despite increased treatments and medication. Please keep her in your prayers.
July 1, 2015 (funny one)
May 5, 2020
Most people don't know, but the life expectancy of someone with CF is about 40 years right now. I bring this up because I was remembering a conversation that I had with Joyli a few years ago. I was tucking her in bed and she looked at me and very seriously asked if she was going to be a grandma. I don't know why she asked me that, and I'm pretty sure she didn't know the life expectancy, but it really took me by surprise. I told her that her mother and I hoped that all our kids would be grandparents, and that I thought she would definitely be a grandmother someday. After I kissed her goodnight, I had a few emotional moments to myself. There is not much I can do personally, outside of supporting her in her treatments, medications, and doctor's appointments. Doing this yearly fundraiser is my way of helping people who are smarter than me find a cure for my baby so that she can be a grandmother.
May 1, 2019
I have been scanning my Facebook history and I found a couple of little posts about Joyli's journey that I would like to share.
November 15, 2023
Please pray for Joyliana. She has a medical procedure today we are very nervous about.
December 22, 2020
Joyliana's appointment at Children's Mercy hospital yesterday did not go well. Her lung function continues to fall at an alarming rate, despite increased treatments and medication. Please keep her in your prayers.
July 1, 2015 (funny one)
Things you find when you are cleaning the closet in your kid's room:
Your ear buds, the ones that disappeared the day you bought them.
A thumb drive you forgot you had.
A very old hard boiled egg.
Red food coloring. The same color that mysteriously appeared all over your walls and carpets (and kids) a few months ago.
A paring knife.
Three bars of Lever 2000. Two still in the box.
And a small assortment of used straws, paper ribbons, and other miscellaneous garbage (treasure) you know you told them to throw away.
May 5, 2020
Most people don't know, but the life expectancy of someone with CF is about 40 years right now. I bring this up because I was remembering a conversation that I had with Joyli a few years ago. I was tucking her in bed and she looked at me and very seriously asked if she was going to be a grandma. I don't know why she asked me that, and I'm pretty sure she didn't know the life expectancy, but it really took me by surprise. I told her that her mother and I hoped that all our kids would be grandparents, and that I thought she would definitely be a grandmother someday. After I kissed her goodnight, I had a few emotional moments to myself. There is not much I can do personally, outside of supporting her in her treatments, medications, and doctor's appointments. Doing this yearly fundraiser is my way of helping people who are smarter than me find a cure for my baby so that she can be a grandmother.
May 1, 2019
May is Cystic Fibrosis awareness month. This is my precious daughter. She is beautiful inside and out. She is full of joy and shares that joy with others. She has taught us to remember to find joy in every blessing - big or small! 
She has an extremely keen mind when it comes to science, engineering, and building. She loves and deeply cares about her sibling's but also finds joy in gently pushing their buttons. Ha ha - she can be a stinker sometimes. This button pushing (or a "good" bathroom joke 
) usually brings on her beautiful, deep, musical giggle. This giggle is the cutest most contagious giggle that ever existed.
She has an extremely keen mind when it comes to science, engineering, and building. She loves and deeply cares about her sibling's but also finds joy in gently pushing their buttons. Ha ha - she can be a stinker sometimes. This button pushing (or a "good" bathroom joke ) usually brings on her beautiful, deep, musical giggle. This giggle is the cutest most contagious giggle that ever existed.She also has Cystic Fibrosis. Decades ago, the average life expectancy age of children who were diagnosed with CF was 3 years old. Today the average age is 37. CF primarily affects the lungs and digestive system but can easily affect other organs such as the heart, liver, and kidneys. Trying to explain what CF is like - "imagine breathing through a coffee straw - every day of your life". We hope and pray for more tomorrows for our precious Joy.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward ā a cure for everyone with CF.
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