Adapted with gratitude from the original article by Lynn and Dave  Frohnmayer on "Coping with Fanconi Anemia," Third Edition 2000 of "Fanconi Anemia: A Handbook for Families and Their Physicians." Diamond Blackfan Anemia: Reactions of Families on the Receiving End This disease doesn’t occur very often, but, when it does, it strikes real people. They have names, families, hopes, and plans. Diamond Blackfan Anemia will affect them profoundly and forever. The experience can be devastating. 1. Denial occurs first. It isn’t happening; it can’t happen. A lethal childhood illness isn’t in our plans. If it is not simply a bad dream or a false diagnosis, there is a quick fix. Medicine—prayer—flight (physical or psychological)—in some combination all might cause the disease to go away. 2. You feel shock. Relief to hear a physician say “It’s not leukemia!” is replaced by slowly growing knowledge that this diagnosis could be worse. We are persons accustomed routinely to news reports of medical miracles. Diagnosis of childhood illness is nearly equivalent to promise of cure. Then, painfully, you learn that this life-threatening illness is not yet well understood, and that no therapy promises an easy cure. 3. Helplessness accompanies this news. Your fate is in the hands of medical professionals, experts who themselves do not have answers and sometimes do not agree with one another. Your child is alive, but threatened. Where do you turn? 4. You probably experience profound anger. You are outraged by the visitation of an undeserved and unanticipated lethal condition. There was no warning, and— really—no possibility of one. You had other plans for your life. You still do. How can you be expected to cope? 5. Guilt feelings may be profound, though not always near the surface. You, together with your spouse, unknowingly passed this disease, hidden deeply within your genes, to a blessed innocent child. No matter that it’s no one’s “fault” and that it cannot routinely be detected by the unsuspecting. The knowledge of genetic responsibility lies deeply in the subconscious, but it can weigh heavily on the soul. 6. Isolation overwhelms almost all DBA families. No one you know, usually even experts, has routinely treated (or sometimes even heard of) this orphan disease. No one else exists to share the anguish, the occasional hopes, and the peaks and valleys of crisis after crisis. Isolation has two other aspects. First, your problems are different in quality and dimension from those of other parents. A friend worries understandably about behavior problems, or frets that her child’s grades will not be competitive for entrance to a top college. Your concerns are whether the last platelet count is telling you that the downward spiral has continued, that your child may not live long enough to experience a single year of college. Will there be another birthday, another Christmas? Will health insurance—if there is any—enable you to secure every possible lifeline of hope? The second aspect is your own potential victimization. You are apart, and people sense it. The wisest of them ask and help, but sometimes even the most sensitive of friends is at a loss for words. You both know it. Without meaning for it to happen, it can wrench you from your community roots and family support. 7. Grief and sadness are a continuing part of your life from the start. We would happily trade places with our children because we’ve had our chance. There is some completeness in our lives, joys, tragedies, and experience of life-fulfillment. How cruel that a child bright with talent and promise might not possess the genetic constitution to know and learn of this vast and wonderful world; to make the choices that shape life; and to have at least the fleeting moments of mature reflection we have known. Any parent wants to be his child’s companion and share the experiences of a child’s maturity. It wrenches. “You cry for them, and you cry for yourself,” one DBA parent remarked. But there are helpful ways to cope: 1. Take things one day at a time and one step at a time. One blood count does not necessarily tell a disastrous story. Counts can ebb and flow, sometimes unpredictably. This disease runs a course, usually a long course (and the more DBA is studied, the longer it seems to be). Plan tasks to deal with this illness in small, manageable doses. Do not project tomorrow into today. 2. Fight back. This is the strongest, most helpful attitude and reaction we can advise. Do not yourself  become a “victim,” even though forces pushing you in that direction seem irresistible. Ongoing research should lead to a greater understanding of the mechanisms of this disease and to possible therapies. Bone marrow outcomes are improving for all patients. Gene therapy holds hope for the future. Raising funds to promote research is a positive way to fight back. You can also fight back by learning more. Increased knowledge helps you to become a strong advocate for the needs of your child. 3. Do not accept the blame or guilt. Every person carries lethal genes. This disease was not predictable, and neither parent is at fault. Marriages have been needlessly damaged because of self-blame or spousal blame. 4. Work with and talk to other DBA families. This network, more than anything, can break down isolation and help relieve grief. 5. Retain optimism. Children do this better than adults. Remember that these conditions are hard on all family members, not just those who are ill. Stress and depression can be contagious; the family needs to concentrate on the positives. Set up occasions that reinforce normal family life. To the extent that it’s medically advisable, treat your child as a normal child who is capable of enjoying a wide range of activities. Enjoy each and every day to the fullest. Live with the knowledge that the future is uncertain, but still might be happy. A healthy 12-year-old brother of two DBA sisters told his parents: “The girls are doing fine, now. They are enjoying this time. You need to enjoy it, too. Don’t ruin the good time by being depressed and fearful about the future. It’s not here yet, and you don’t know for sure what it will hold.” It’s good advice. We try to live by it.