Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. She was created by God for purpose. I always told her she brought out the best in people.

By Sarah Borden Our lives changed forever the day we learned our son Eli was diagnosed with Fanconi anemia. Just days earlier, we had celebrated his fourth birthday with family and friends, blissfully unaware of the journey ahead. When faced...