Emily was born on April 7th, 2008. We are a military family and we were stationed in Okinawa, Japan at the time. We knew something was wrong while I was pregnant but didn’t know what was going on. Emily was born early and only weighed 3 lbs, 1oz and 15 inches long. She was missing her left thumb, had a horseshoe kidney, was very anemic, had a small optic nerve in her left eye, deformities in her C4/C5 vertebrae and a small hole in her heart. Emily was diagnosed with VACTRL association. It took a month for the NICU doctors to diagnose her with Fanconi Anemia.
Emily is 8 years old now and has gone through 10 bone marrow biopsies, 1 liver and 1 anal biopsy, 2 eye surgeries, a thumb was made for her using her left index finger and countless blood draws. She must go to the hospital every time she gets a fever and has been hospitalized for viruses that only make us sick for a day. We try to give Emily a “normal” life as much as we can but she is very aware of the dangers that come with FA. She has lost friends to the disease and has many sleepless nights worrying about cancer. She’s afraid to have a bone marrow transplant. She needs a cure so she can be a regular child with regular worries!