Dear Henry

Henry, I talk to you a lot about heroes. You are one. Amy Frohnmayer is one. Her mom, Lynn, and her dad, Dave, are heroes too.

This is a letter Amy wrote for her parents to send to their friends.



“Do what you can, where you are, with what you have.”
­ Theodore Roosevelt


Dear friends,

Last year, my mother sent me the simple quotation above. It¹s taped onto the wall opposite my bed and I read it every day. Mom sent this at a time when I was having trouble concentrating due to a drop in my red blood count. I had never before felt quite so fragile, maybe even a little defeated by Fanconi anemia (FA). I spent hours on homework that previously had taken little time to finish, and I couldn¹t escape on long runs because I didn¹t have the energy. That period of time last winter reinforced a sense of uncertainty that FA instilled in me from a young age.

I have always known that I have FA and from early on, I experienced heartbreaking losses that never let me forget the destructive power of this illness. I was four when my sister Katie died, and eleven when I lost my sister Kirsten. Over the years I have also lost many close friends to FA whom I met at our summer family meetings and grew to care about deeply.

Long ago, I assumed I would need a bone marrow transplant while I was still young, because I would be strong and my chances of making it through that strenuous procedure would be better. The decision to have a transplant, however, should be based on a severe deterioration in my health. I always thought this would happen soon, but I remained healthy. Although I have been incredibly lucky, I have never known when my health would take a serious turn and I would need to go to transplant. As I grew older, I feared more and more this sudden and inevitable interruption and I felt powerless to predict it.

As frightening as all of this has been to me, I am well aware of the enormous progress that has taken place in Fanconi anemia research. For these advances, I feel deeply grateful to the Fanconi Anemia Research Fund, which has supported the work of experts around the world. I am especially thankful for the wonderful donors who have made this possible.

Whenever I am able, I attend research presentations at family meetings and speak directly with bone marrow transplant experts. The consistent and rapid advances in this field are incredibly exciting and merely thinking about this progress gives me hope. Just last August, I learned that twelve out of thirteen FA patients are now surviving a new bone marrow transplant protocol for those with unrelated and mismatched donors. I learned about the potential of treating patients with healthy adult stem cells. Doctors spoke about new methods for detecting pre-cancerous cells in patients, so that cancer can be identified and treated very early. Doctors are concentrating on all facets of this complex and devastating disease, working to make long and full lives a reality for all of us who share it.

FA has been the source of tremendous pain, but has also been a surprisingly strong positive in my life. It has shaped my personality, goals and interests, and forced me to grow in important ways. FA is imprinted in all of my activities, from being a grief counselor for children and an intern with a children¹s hospital, to writing articles about the psychosocial aspects of living with a genetic illness, and to my long-term goal to become a genetic counselor.

To live with FA is to learn to value life in a different way. FA reminds me to try to appreciate every minute of the day, to treasure my close friends and family, and to immerse myself in the college learning experience.

Now, as I begin my junior year in college, I want to do all that I can to find a cure for this disease. Since last spring, my health has improved, and I have the energy to help make this dream a reality. I¹m writing to ask for your help by donating to the Fanconi Anemia Research Fund. And I am writing now because there might be a time when I can¹t, and because at this moment, it is something I can do with all the passion I have.

Thank you so much for your support. It honestly means the world to me.

Amy Frohnmayer