Where were you the day your life changed forever? Do you remember how you felt the moment you knew nothing would ever be the same again?
Sean was in his early 30s, married to his high school sweetheart, Allison, and had just become a father. He was working at an orphanage in Honduras when his world changed. After a handful of skin cancers, a bout of Hand, Foot, and Mouth disease, low white blood counts, and missed diagnoses, he finally had an answer. Sean had a rare, life-threatening genetic disease: Fanconi anemia (FA). And he needed a bone marrow transplant. Just like that, the clock started ticking.
Life since then has been a rotating door of doctor’s visits and hospital stays. Cataracts on both eyes. Hip replacement. Pneumonias, infections, graft vs host disease. Tongue cancer caused the removal of half of his tongue and all of the lymph nodes on one side. Bladder cancer resulted in the removal of his entire bladder and prostate. Other cancers include gums, throat, and cheek in addition to close to one hundred skin cancers.
Sean turned 40 last month. He spent his birthday having another tongue cancer removed. Each time her husband is in surgery, Allison asks herself the same questions: “Will this be it? Will this be the thing that takes his life? He’s buzzed past the median age of death for this disease, so he’s already a ticking clock. Will this cancer be the thing that stops that clock forever?”
“Am I grateful? Am I changed? Do I owe my life to research? Am I scared? Do I treat every day as the gift that it is? Do I live each moment with the sound of a clock in my head? Do I make the most of my time? Absolutely yes.” – Sean
How can you help?
The question you might be asking is “how can I help to improve and expand the lives of Sean and all those with Fanconi anemia?” For 30 years, generous and committed donors, researchers, doctors and supporters like you have answered that question: research. You have helped doctors understand this disease. You’ve helped discover treatments and you’ve helped to make them safe. You’ve allowed scientists to uncover the direct connection between Fanconi anemia and cancer. Thanks to you, children with Fanconi anemia are living to adulthood. It is devastating to know that once they reach that milestone, they are often confronted with painful and serious cancers like those Sean has faced.
You can help Sean and all adults and children with FA by supporting research. Your gifts fund clinical trials and projects to detect, prevent, and treat cancer. Your donations give Sean and others more moments to spend living, and fewer moments spent counting down time.
