Mother facing the diagnosis of her child with ultra rare disease with no cure

My son was born with a condition that his doctors could not identify. The doctors told me that there was something wrong with my son but they were not able to pinpoint what exactly it was. They did, however, tell us that this condition was going to affect him his whole life. He wasn’t able to feed like other children his age. Our world just shook. We didn’t know how to process this information about our son. My husband and I brought together a group of researchers that we could communicate with the see if they were about to tell us anything about our son’s condition. We found ourselves stressing out but turned stress into action. Since the birth of my son we have been more involved in our community. We volunteer at different places in hopes that the goodwill is given back to us. Preparing for the arrival of a child can be exciting and overwhelming at the same time. However, finding out that the child is not normal and there is no treatment for him can be devastating. One relies on the expertise of the pediatrician to identify the condition but when even they were stumped the feeling can be paralyzing. Turning ones feeling into actions helps one overcome. Sharing stories is uplifting for them and for those that can relate to them. Rcoz.us is a platform that encourages sharing of short stories to provide an impact on those that share and those that view stories.