Initial reactions are usually those of shock and disbelief. Denial is a psychological term used to describe these reactions. When limited in duration, denial offers protection from the initial impact of diagnosis. Medical explanations of the disease may be heard, but not remembered or understood at this time. Once the reality of the diagnosis is acknowledged, feelings of anger and depression tend to dominate.
Many parents experience guilt, especially when the disease is known to be inherited.
While everyone is unique in how they handle a crisis situation, generally it tends to bring out the best and the worst in us all. One parent may be consumed with worry, while the other needs the distance of work or hobby. Siblings who initially were concerned, supportive and independent, may suddenly become resentful, demanding and dependent. It is not unusual for them to become jealous of the attention centered around the sick child. Siblings need to verbalize their feelings and concerns.