As some of you may know, Harry was diagnosed with Cystic Fibrosis when he was just ten days old. There are moments when it feels distant - when we watch Harry playing, laughing, and keeping up with his friends, and for a brief moment, CF fades into the background. And then there are moments when it’s impossible to forget.
 

Over time, CF has become part of our family’s new normal. It’s woven into our routines, our decisions, and the way we move through the world. We’ve grown to understand what living with CF really means, and we are doing our best every single day to accept that this is part of Harry’s journey until a cure is found.

Every day begins and ends with treatments to help clear Harry’s lungs. Every meal and snack requires enzymes so his pancreas can absorb the nutrients his growing body needs. Every interaction comes with an added layer of thought and caution and lots of hand wipes. We are constantly monitoring germs, environments, and exposures, because for Harry, something minor for another child can become serious very quickly.

We also have had small victories! A good X-ray. Seeing his oxygen levels hit 100%. His weight gain and growth! These moments mean everything! They’re signs that the treatments are working, that the routines matter, and that Harry is doing great.

CF is often called an “invisible disease,” and that couldn’t feel more true. You wouldn’t know by looking at Harry how much work goes into keeping him healthy. But behind the scenes, CF touches nearly every part of our lives. The mental load is heavy. Planning, timing medications, advocating, worrying, and staying vigilant - all while trying to give our son a joyful, carefree childhood. It’s exhausting at times, and it’s relentless but it’s also what loving Harry looks like.

We are incredibly grateful that Harry will qualify for modulator therapies when he turns two this September that will dramatically improve his quality of life. Harry qualifies for this because of the type of CF genes he has. These therapies exist because of decades of research funded by families, donors, and communities who refused to give up. At the same time, we know so many families are still waiting, hoping for options that work for their children. That’s why this fundraiser matters so deeply to us. Research is working!! Progress is happening!! And continued funding is what will carry us the rest of the way.
 

Cystic Fibrosis affects the lungs, pancreas, and other vital organs, making breathing harder and everyday illnesses more dangerous. No two CF journeys look the same. While there have been incredible medical breakthroughs, many people with CF still don’t have access to treatments that work for them and there is still no cure. BUT we are closer than ever! We hold onto hope, real, tangible hope, that during Harry’s lifetime, CF will no longer define his future. Our dream is simple: that Harry can grow up healthy, free, and with the same opportunities as any other child.


We also want to say thank you from the bottom of our hearts to everyone who joined our team, donated, shared our story, or supported us last year. Your generosity carried us through one of the hardest seasons of our lives. You reminded us that we are not alone in this fight, and we can never express how much of an impact that has made on our family. Thank you will never be enough.

Thank you for being here, for caring, and for standing with our family. Together, we can make a difference, for Harry, and for everyone living with Cystic Fibrosis!!