During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s post features Dylan Mortimer—an artist and double lung transplant recipient who uses bold, glitter-covered art to share his journey and bring hope to others with CF. 

I was born in 1979 and diagnosed with cystic fibrosis (CF) at three months old. Back then, there was so little hope for the disease; the future for someone like me was uncertain at best  Yet, I managed to defy the odds through my childhood, going on to graduate from college, fall in love, get married, and even start a family as a father of two.

But, with every personal milestone achieved, my lung function continued to deteriorate. I tried to hold onto hope that mutation-targeted therapies would soon be approved, but my lungs were too scarred and too damaged. In 2017, at the age of 37, I underwent a double lung transplant.

For a brief time, things felt promising, until, just 18 months later, I went into rejection, when your body attacks the new lung as a foreign body. My only other option was to undergo a second double lung transplant, but because of the antibodies that developed from my first lung transplant, my chances of finding a match were virtually nonexistent.

As I found myself on the transplant list yet again, facing what seemed like insurmountable odds, the mutation-targeted therapies I was so dearly hoping for were finally approved. I saw images of other people with CF from around the world celebrating their new life and newfound health.

I was elated for them! But inside, I was shattered.

The therapies I had waited for and fought so hard to benefit from had come too late for me. My body had already endured too much. I had missed the window. The despair was crushing.

Even so, I held on to hope for myself.

Then—something miraculous happened. A woman who followed my journey on Instagram saw my story. Her cousin had just passed away, and their family was looking to honor his life through organ donation. She reached out, not even knowing if we’d be a match.

A one-in-a-million chance. And somehow… we were.

I was transplanted a second time in 2019, revived once again from death.

That experience didn’t just change my life. It changed how I told my life.

Art has always been a part of me. From a very young age, I was drawn to creating—I studied art in college and went on to graduate school in New York City to pursue it further. Over the years, I have worked in a wide variety of mediums, from sculpture to painting and even collage. But until I was listed for my first transplant, I had never used art to explore or express my health journey.

It took time to reconcile that part of my life, but once I did, art became more than a creative outlet—it became my voice, my way to share the unspeakable, to inspire, and to offer hope to others navigating the hardest chapters of their own stories.

The symbols in my artwork are drawn directly from my lived experience: scars, cells, IV bags, ambulances, hospital rooms—the physical and emotional markers of a life spent fighting for breath. While all these things are very traumatic, they are also simultaneously the things that saved me. The battle and the lifeline.

Of all the materials I could use to render these objects, I chose to bathe them in glitter—and not a little bit, but rather fully covered, unapologetically, in this shiny material! Glitter is messy. It’s invasive. It clings to everything and spreads just like disease. It can really get on people‘s nerves, just like disease. And yet it is transformative and beautiful. It catches the light. It demands attention. It turns the ordinary—and even the painful—into something undeniably beautiful. In that way, it mirrors our stories of survival, of resilience, of reclaiming something radiant from the wreckage of disease.

I want my artwork to be a vessel that transforms seemingly hopeless situations into paintings and collages that are aggressively joyful, and aggressively hopeful.

Because that’s the kind of hope it takes to survive when the odds are stacked against you. It’s not quiet or passive. It’s fierce and stubbornly brilliant in the face of darkness. That kind of hope is what has carried me through a life that, on paper, should not have looked like this.

When I was born, the average lifespan for someone with CF was about 14 years. There wasn’t much in the way of a roadmap, let alone dreams of adulthood, marriage, or fatherhood. But here I am—now 45 years old, 20 years married, with two incredible sons who are 16 and 14. And this past year, I ran the New York City  marathon.  What a blessing to be alive!

We have come so far in this race against CF, but we still have so far to go.

Everything I’ve achieved has happened apesar de not receiving mutation-targeted therapies in time to avoid transplant. While there is now more hope than ever for young people with CF, there are still many who are unable to benefit from mutation-targeted therapies. I fight and hope for them, just as so many have fought for me and given me hope.

That’s the thing about our amazing CF community—we are in the business of giving hope to the hopeless. Much like drenching difficult truths in glitter, we illuminate the dignity, the resilience, and the unexpected radiance that lives inside even the darkest moments. We press forward—not just for ourselves, but for those still waiting; still in need. And we will keep pressing forward—boldly, creatively, and full of hope—until every last person has access to the lifesaving therapies and futures they deserve.

Autor

An artist and person living with cystic fibrosis, Dylan Mortimer graduated with a BFA from the Kansas City Art Institute and a MFA from the School of Visual Arts in New York. He exhibition history includes the University of Southern California, Dallas Theological Seminary, Haw Contemporary, and Columbia University. He has also created public art installations in several cities including New York, Chicago, Baltimore, Kansas City and Denver. He and his wife Shannon have two sons and live in Los Angeles. 

Learn more about his work by visiting his website aqui.