THE DIAGNOSIS
LM: I was seven months pregnant with our second child, Sean. They kept measuring the size of his head — something was not right. At 36 weeks, they induced. This was 2002. They threw out all kinds of crazy diagnoses. When Sean was about a year old, we got a letter from the geneticist saying it may be this disease called Fanconi anemia.
KM: We looked up the symptoms, and we knew. The tests confirmed. FA is a genetic stability issue that, for the most part, manifests in bone marrow. When cells replicate, the DNA gets messed up, and cells either die off or become leukemic. Usually by age 7, the cells either don’t produce enough blood to sustain life, or they become cancerous.
LM: At that time, the survival rate to adulthood was 20 percent.
OUR RESPONSE
LM: We cried for two weeks. Then we had this moment — we can either live our lives under a dark cloud, or we can be positive and fix it. We decided to get busy fundraising through the Fanconi Anemia Research Fund.
KM: We’ve held numerous events and fundraisers, attended medical symposia, gone to FA camp in Maine each summer — you name it. I’ve also been on the board of FARF for about 12 years. It’s been exciting to not only raise a lot of money for research, but also to help establish blueprints for other families to get involved — both with FA and other “orphan diseases.”
We are fortunate. Sean's a rock star.
OUR SUPPORT SYSTEM
LM: From the get-go, a whole circle of friends rallied — I’m going to cry — to help us. At first, I was hesitant to solicit, to put our kid out there. But on the other hand, you have no option. I feel so blessed and honored at every step to be surrounded by these people from all parts of our lives.
OUR PROGRESS
KM: Today, there is so much more hope and progress. We are fortunate. Sean’s a rock star. His counts have stabilized, so we’ve been blessed with years of normalcy that most families in our situation don’t have.
OUR MESSAGE
KM: Everyone has something in their life, and our story connects with them. We’re still astonished by the support. And the nucleus of that support comes from our friends from Richmond.
LM: Sean knows all these people have his back.