What does it mean to be a hero? I’ve come to define it as an ordinary individual who goes above and beyond the call of duty in spite of insurmountable odds. If that’s true, we’re surrounded by heroes all the time. They’re the ones who fight the good fights because their worth fighting for their own sake. They’re the ones who inspire others to be better people. They’re the ones I aspire to be.
The superhero narrative entices us all and is literally the story of my life. I was born with a rare genetic disease called Fanconi Anemia, primarily a DNA repair and bone marrow failure condition, which, for me, resulted in 8 birth defects with 49 subsequent surgical procedures. At age 3, my life was saved by the heroic act of an unrelated donor who, out of shear generosity to a complete stranger, provided the stem cells needed to save my life through a bone marrow transplant. The procedure involved the use of chemotherapy and total body irradiation which was necessary to suppress my immune system to be reborn with a new one. I was given a second chance at life; one I will never take for granted. My experiences have instilled in me a strong moral ethos and desire to make a difference in the lives of others. Today, I stand strong, healthy, and proud of who I am. I may not fight crime or have big arms, but I’m always fighting for life and encouraging others to save lives. I am…Captain Marrow!
I created the superhero persona, Captain Marrow, to fight alongside those like me, to honor those who have fallen, and to empower others to be the Captain of their own story. I may be able to control the waters, but I can control my own ship. I may not be able to control what life throws at me, but I can control how I respond to it. None of us truly know how much time we have left on Earth, despite any statistics that are thrown at us. The best we can do is live for today, making the most of every breath.
My mission is to partner with nonprofit organizations, schools, businesses, and families to educate communities, support patients undergoing medical procedures, and advocate on behalf of individuals with medical illnesses on a national and global scale through public speaking and first-person comic book narratives illustrating my origin story, inspiring stories of other heroes I’ve encountered, and the journey ahead of me.
I will be partnering with nonprofit organizations like Be The Match, an organization dedicated to recruiting donors for the national bone marrow donor registry, to inspire comic con attendees to be their own superheroes by donating bone marrow to save the life of another. In addition to comic cons, I will also travel to conferences, fundraisers, donor drives and hospitals around the world. By combining the medical world with a superhero narrative, the message becomes clear to patients, politicians, and the public that individuals with medical conditions are worth saving because life is worth living for its own sake. As an award-winning leader in the medical community, I have strong connections within the global rare disease community through the Fanconi Anemia Research Fund and the National Organization for Rare Diseases.
Ironhead Studio, the costume designers behind major Marvel and DC superhero films, in partnership with Ribuoli Digital, have agreed to design a professional Captain Marrow superhero costume to be worn at all appearances.
You can be a superhero too. Help me help others in my launch of Captain Marrow by spreading the word and supporting my Kickstarter with early-release reward packages including comic books, apparel, enamel pins, and more. We don’t have to change the world to help people, but we can help change someone else’s world.
ABC 7 Chicago Interview: https://www.youtube.com/watch?time_continue=1&v=_xxl7SAXQUE&feature=emb_logo