By Mariano Duque
At the Fanconi Cancer Foundation, we’re honored to share the voices of people living with FA and their families. Their stories remind us why research, support, and community matter so deeply. Today, we’re sharing Mariano’s journey in his own words—reflecting both the challenges of FA and the strength to keep moving forward.
For me, Fanconi anemia (FA) has always been part of my family’s story. My youngest sibling was diagnosed at age 12. Recently, I received my own diagnosis, something I never expected.
My journey started with an emergency trip to the ER. Suddenly, I was losing the ability to speak clearly and could no longer use my left arm and leg. After a biopsy, I was diagnosed with FA this past April. I never thought I would ever have to deal with something like this. My doctors have shared that I may also have FANS, which is relatively new. And there is no cure.
Life with FA
Living with FA is complicated. Every day, I carry the fear that the tumor will return, and that next time things might not go as smoothly. I’m dealing with low vision, issues with coordination, and I cannot work.
Some moments are impossible to forget: photos from my surgery after my tumor was removed, and images of my younger sibling in the hospital after their biopsy. These memories remind me of both the pain FA brings and the resilience we carry.
I’m living life one day at a time. I recently adopted a kitty, who is teaching me how to take things slowly, how to do things one day at a time, and it took a lot for me to do this video, especially because I’m someone who is very happy go lucky, but I’m also someone who is private. This is my way of opening up to people.
I wish people understood that FA is often invisible. On the outside, you may not see it. But it cuts deep, requiring immense sacrifice from every member of the family.
My Outlook Moving Forward
Right now, my hope is to stay strong enough to finish my master’s program. Beyond that, I want to keep learning and sharing what I know about FA, so that more people understand this illness.
I am a poet, a writer, and a storyteller. Last year, I published a book, and I’m now working on my second, an anthology. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.
To those who support FA research: your generosity matters. You may not see the impact right away, but it’s there. Every single contribution helps move research forward and gives people like me the chance to pursue our dreams and bring a brighter future to life.
