We knew Bella would be special before she we even
born. In 2004, this little miracle came into the world too early,
weighing just 4lbs, but fighting to live from Day 1. Her first 84 days of life were spent in the NICU where she underwent surgery to place a feeding tube because there was no connection between her esophagus and stomach. Eventually, her esophagus was connected, and we brought her home. But during the first 6 years of her life, she would spend over 200 nights in the hospital for surgeries (including open heart surgery at 13 months old), illnesses, unexplainable medical events (like seizures) and therapies. We knew that all of these medical issues must have some common connection and we continued to search, with the help of geneticists and other doctors, until we finally had a diagnosis in September of 2010. Fanconi Anemia.
We were devastated to find out that our beautiful daughter had a terminal, uncurable, life-changing disease. Fanconi Anemia, we were initially told, is a death sentence. I actually prayed that she had cancer instead – because at least then we would have a chance at one day saying Bella was ‘cured.’ After mourning the loss of the normal life we anticipated for our daughter, we made the decision to help her fight. Fight this disease, fight to find a cure, fight to save our daughter’s life. Bella is currently in moderate bone marrow failure. We know it is only a matter of time before she will need a bone marrow transplant which will wipe out her existing, sick bone marrow and take her to the edge of death in the hopes that we can save her life. She struggles in school because she misses so much due to illnesses, surgeries, and doctors appointments. She struggles with friends because she is smaller than her peers and they simply cannot understand what it is like to live with a terminal disease. She struggles with her health as her own body is failing to produce the blood cells she needs to live, grow, and thrive. But these struggles just make her spirit stronger and we know that no matter what, this little warrior shows us every day that miracles really do exist.