My Great Strides Story
Jackie Hess
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
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.
A Personal Story from Our Family:
Our son, Nolan, was diagnosed with cystic fibrosis at birth through the heel prick test. The news was a shock, but after meeting with Nolan’s incredible care team at University Hospitals, we decided to put our trust in them – and in the future of CF research by the Cystic Fibrosis Foundation.
We quickly realized that, while we could rely on doctors and nurses, we needed to do more. That’s when we found Great Strides. This will be our 4th walk, and Nolan will be turning 3 years old! The time has flown by, and so much has changed.
Nolan’s first year was incredibly challenging for all of us. He struggled to gain weight, had trouble eating, and it was difficult to get him to take the medication he needed to help him digest food. As parents, we constantly worried about germs, bacteria, and how they could affect Nolan's fragile immune system.
But today, Nolan is thriving! He’s a true rockstar. Although he still struggles with weight gain, he knows that eating well makes him strong. He’s a pro at doing his daily therapies – from his Vest Therapy to his nebulizer treatments, and he never hesitates to take his enzymes and Trikafta, which help manage CF’s symptoms. He even takes up to 24 pills a day, plus vitamins, without a second thought. This 3-year-old is truly a WARRIOR.
As much as I’m proud of Nolan, I don’t want him to have to go through this every day. I don’t want him to face the harsh realities of CF. The truth is, every CF journey is different, but they all come with the same challenges: daily treatments, medications, and a constant awareness of germs and bacteria.
That’s why we’re fundraising. Our goal is to help make everyone’s journey easier – through new therapies, treatments, and ultimately, a cure. We won’t stop until there is a cure for everyone living with cystic fibrosis.
We need your help to keep fighting, and we hope you’ll walk with us. Together, we can make a difference!
Thank you for supporting our mission, and for walking alongside us.
Love,
The Hess Family
Jason, Jackie, Gavin and our warrior, Nolan
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 – a cure for everyone with CF.
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