Jackie Hess

My Great Strides Story

Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. We walk for them and our son Nolan.

You can be part of our NOLAN PATROL! No matter the amount, every single dollar counts… every single share, every voice, it all counts. No matter what you can do to help lead us down the path to a cure is appreciated. 

NOLAN PATROL IS ON A ROLL!!!! 

Our sweet Nolan, born March 8th 2022, had a safe and healthy delivery. We took our sweet boy home only to receive a phone call that he had an abnormal newborn heel prick test.  It was confirmed via a sweat test that our precious boy had Cystic Fibrosis (CF) - a progressive genetic disease that affects the lungs, pancreas and other organs. Immediately following the diagnosis, we were told by our Doctor over the phone DO NOT GOOGLE Cystic Fibrosis – and that’s because the outlook would surely be grim - but good things were happening, so PLEASE check out CFF.org

 
After this phone call that changed our lives, we found ourselves on the Cystic Fibrosis Foundation website gathering information for ourselves, family, and friends. If you were here with us these last two years, you know this is how our Great Strides Journey started. While grieving the life we planned on for our sweet boy we decided that, although Nolan was just born, let's be part of this Foundation and their mission -- let's do whatever we can to do. One thing that is very much in our control is creating awareness for this disease, as many people do not know about it. As a mom, I personally grieved most of the first year of Nolan's life. How could someone so little have to do so much just to live? He has proved to me and our whole family that Cystic Fibrosis will not stop him from enjoying life. With big brother Gavin by his side as his best friend, these two prove to me love makes anything possible!

In fact, we took several vacations, 2 beach trips and a trip to Disney World in 2023-2024 thus far. We visited many "public places", playgrounds, restaurants, and had family and friend gatherings. All of these things were met with so much fear and anxiety when Nolan was first diagnosed. We are doing things we never thought we would feel comfortable with. We always said we would not put him into a bubble, but there are reasons to be so cautious. Any virus Nolan catches will linger twice as long and could result in a hospitalization. Nolan can pick up invisible bacteria that do not cause harm to a "healthy person" and these bacteria are EVERYWHERE. Today, Nolan's daily protocol is 3-4 enzyme pills with every meal, 1-2 pills per snack, 30 minutes of chest therapy twice a day (3-4x if sick), and 10 minutes of nebulized medications twice a day or his inhaler. In addition, Nolan needs to receive the RSV antibody shot Synagis each month during the RSV season, and he will soon be having blood draws every 3 months in order to monitor his kidney function while on what is referred to as “a miracle drug,” TRIKAFTA. We were told when he was first diagnosed that this drug may be an option (at 6 years old, now 2!) when he was born, and it is finally almost his time to see what it can do for him. We are so grateful, but we also meet this new medication with some hesitation because of known and varying side effects. We will watch him closely and, as his parents and medical advocates, we plan to adjust his dose as we see fit. We will be sure to give updates after he receives this medication!--UPDATE! Nolan began a half dose of the morning TRIKAFTA and we have not had any alarming side effects. We will see what his blood draw says in June and if all looks good we will plan to bump up his dose! 

There is so much to look forward to as Nolan continues to grow. He will never have it easy. He has to put in work each day, but as hard as the days may be sometimes and although we have so many fears, we also have so much hope because of the medications and therapies funded by the Cystic Fibrosis Foundation (CFF). Without this organization, the quality of life and the life expectancy of someone with CF would not be where it is today… not nearly. However, there is still so much to be done, and if we keep raising awareness and fundraising for the cause of advancing the science, we know that one day CF will stand for CURE FOUND, and you can say that too. During the year, Jason and I and our families do a lot of fundraising, and because of our collective contributions, we have been invited to several events by CFF. We were even invited to tour their main lab located in Boston (we plan to accept the invite this year). We believe in this Foundation; we believe in their Path to a Cure. 

I would like to thank my Mother and Father In-law, and Physicians Ambulance for their generous donations these past two years. Our family and friends have helped us raise over $100,000 in just 2 years of being members of the CF Community. With the tremendous support of family and friends, we raised over $60,000 in Great Strides (Walk) alone! We are forever grateful.

It is time to keep the momentum going. We ask you all to stand by our family's side on Saturday, May 18th at The Great Strides Walk 2024 at the Cleveland Metroparks Zoo (8:30 am). If you cannot physically be there, we completely understand- but we still hope for your donation and support. If you have a business or workplace willing to do an employer match, I can help you. If you want other fundraising ideas, I am happy to help you in this regard too.

I want to take a moment to especially thank Garrett and Ashley Hess, who joined their local CF Chapter in Charlotte, North Carolina and in just a few short months raised over $20,000 for their Chapter. They quickly jumped right into fundraising on their own because they truly understand it is not just about Nolan Patrol's fundraising, but that any amount going to the Cystic Fibrosis Foundation gets us that much closer to a cure. 

I also want to thank Joe and Alexis Spooner and Spooner Risk/Surety HR last year for their workplace competition that raised over $3,000 from employees that have never met us, but read our story and made a donation. 

We will show Nolan that all these people (people he doesn't even know, some we do not even personally know) believe in him and believe in a Path to a Cure and the Cystic Fibrosis Foundation. Nolan will look back and realize how many in his family and friends’ network, near and far, helped make CF stand for Cure Found!

Nolan Patrol is on a Roll!!

From the bottom of our hearts,

Jason, Jackie, Gavin and our warrior Nolan