By Kathy Tomalesky

My daughter Emily was just six years old when we learned she had Fanconi anemia (FA). After Emily had a series of nosebleeds and unexplained bruises, we took her for routine bloodwork right after Christmas 2021. A day later, her pediatrician called us urgently to say Emily’s blood counts were dangerously low and we needed to bring her to the hospital immediately. While there, she had a bone marrow biopsy and was referred to hematology. After weeks of testing to rule out other conditions, we received confirmation in January 2022—Emily had FA. We were stunned.

Emily had a bone marrow transplant in May 2022. While that procedure was life-saving, it isn’t a cure. This was a turning point for us. It showed me not only what she was dealing with but also her incredible strength at such a young age. It also reminded us that just because she doesn’t look sick, doesn’t mean there isn’t something lying under the surface. She may act like a “normal” kid, but she’s constantly going to doctor appointments and carries an underlying worry of getting sick.

We’re constantly worried about symptoms and about avoiding anything that could increase Emily’s cancer risk. Because of her experiences with emergency hospital visits, Emily is now very afraid of doctors. Any illness or injury can feel frightening for her and for us.

And yet, Emily is much more than her diagnosis. She’s an athlete and an artist who loves playing soccer and basketball. She creates paper dragons for her friends, enjoys drawing, and is a proud Swiftie.

I hope that research continues to expand options and extend life for people with FA. Research brings hope and longevity for those who deal with FA and their families

To the FCF donors, thank you, thank you, thank you for all you do! The FA community is nothing without your support. The Fanconi Cancer Foundation has been such a source of information and support. We appreciate this organization more than you will ever know.